Friday, May 05, 2006

A Small Syrinx can cause Big Problems: Tell the doctors

Someone on the asap.org message boards started a thread asking people with "small" syrinxes to report their symptoms. I decided to post my response here, along with extra late night rambling.
Many of us struggle with physicians who seem to believe that symptoms correlate strongly with syrinx size, even though there is no supporting research. I say the patient's own senses are a powerful diagnostic tool; listen to your patient.

I have 3-4mm syrinx at widest.. c4-c7 and t4-t12.. No chiari visible on brain mri. (diagnosis 8/2005).

I have gone from being very athletic and active to struggling to walk at times (poor proprioception, weakness in legs)

I have pain in the neck (from c7 up), and a lot of muscle spacticity/tightness long my spine and in my legs. I have headaches with pressure sensation in head and neck. Almost constant throbbing sensation in head and neck. A numb patch in throat comes and goes and I have trouble swallowing sometimes. For a while, I had some annoying frequent urination and leaking sensations. I often have weak/shaky legs, numbness in feet, heels, hands, elbows (comes and goes).

It is *hard* to find a doctor who believes that the syrinx (or its cause) is the root of my symptoms, even though the cervical location is consistent with the numbness in my hands and arms, my first warning symptom. Although I was in tears in pain multiple times last week, my neurologist will only prescribe neurontin and a little flexeril if I beg.. She doesn't seem to believe that my syrinx(s) causes the symptoms I'm reporting. She told me I should see a PCP if I have "tight muscles" because she's a "nerve doctor". This spacticity is messing up my body. I exercise and stretch an hour a day.

No neurologists or PCPs specialize in SM, so finding a doctor who will treat appropriately is trial and error. I don't want to be popping pills, but I don't want to feel like dying either. Surgical treatment of SM without ACM is just starting to show some minimal promise. We need to improve this situation...

155 comments:

Anonymous said...

I just left my neurologist's office 1 hour ago and he wouldn't even listen to me about the increasingly worse pain I have that is caused by my syrinx. He said it was so unlikely to be that so he just blew me off.

I went from active to doing very little or nothing and I know my body. Why is it they find the syrinx, but when we begin having problems, they say it's not the syrinx?

I'm going for an MRI tomorrow and am going to get the films and report myself. Then I'm going to another neurologist and neurosurgeon for another opinion. I'm not dreaming that I can't do much.

Sometimes the pain makes me cry, my neck hurts, headaches are daily and hurt like the dickens, icing my neck is the norm and not sleeping is too. I also get burning bumps on my toes and now they are coming on my hands, yet my neurologist just ignorned me today other than sending me to get an MRI WHICH I HAD TO DEMAND!!

Anonymous said...

Hi, I was doing some research on syrinx's and came across this blog.
YES! YES! YES!! I went in for an MRI last year because of all my back pain and they found the syrinx. I was told that none of my pain is coming from anything that was found on the MRI!! BS!!
I have started receiving epidural spinal injections but they are not helping.
I'm so glad I am not going crazy and there are others out there!

Trixiemay said...

I have had symptomatic syringomyelia for about 20 years now and my syrinx is very small. I had a cervical lamenectomy and durotomy almost 10 years ago and had no relief from symptoms as I had gone the first 8 years without any treatment. This is a very difficult disease to live with and very few doctors seem to believe that even with a small syrinx the disease progresses even if the syrinx doesnt. I am on so many meds that most are shocked I am even awake at all. I only wish the doctors would do more research in terms of the symptoms rather than the size. I am always sorry to hear others going through what I continue to suffer with. The fact that most doctors seem to ignore the symptoms and their progression versus the size. It is the symptoms that create the misery both physically and emotionally and leave the us feeling very alone. If you would like to know what meds I have found effective please email me at trixiemay@charter.net
Dont give up on yourself even if the doctors do.

Unknown said...

I am interested in your blogs, especially since it has been 2 years since most of you have written. I have been diagnosed with Chiari Malformation and 2 syrinx's (one in thoracic and one in lumbar), but I am also in the same boat in that they are very small. I have had pain on and off for 9 years (since a rowing injury), but 2 weeks ago it crippled me with numb legs. My surgeon has said similar - that it's just a coincidence I'm getting so much pain in the same area as the syrinx. I'm a physical Education teacher and I want to know if I carry on with my active lifestyle (after the pain has gone away of course) if I'm going to make things worse for myself. has anyone found anything that helps the symptoms or syrinx go away??

lydia said...

I just don't get it. I've read several online blogs about people who have small syrinxs and all kinds of pain and doctors just don't listen. I was found to have a syrinx in my neck on 8/2007. I hit my head at work and kept having headaches and neck pain that got progressively worse. This injury occured in 10/2006. By 3/2007 the pain was unbearable.
I think because I kept working and it was a very strenuous job I may have sped up the symptoms. Of course when we found out I had a syrinx my GP had no clue what it was and she actually had to google it in front of me . She couldn't even take the time to research it before I saw her. She read two lines and said it was hereditary. I went home and did my own research. The first neuro I saw said my syrinx was too small and it couldn't be causing my pain. I was so upset and cried all the way home. That's when I got mad and got myself one of the leading neurosurgeons who has done lots of research on the topic and he agreed to see me. He told me that yes the syrinx could be causing my symptoms, but of course I have to fight with workers insurance because no one can agree wether this syrinx was caused by my head injury. It has been a nightmare. I have severe pounding or throbbing headaches along with neck pain. I also get a burning pain in my neck and intermittent numbness in my legs and arms. I get pain in my back and in my legs that makes it hurt like hell to walk some days. I just don't think they listen to patients. How can all these people all over the world that I have read about have the same symptoms with a small syrinx. My GP is also so scared to give out or try different meds that might help. I suffered tremendously for the first year before we knew that I had a syrinx when she finally put me on morphine SR and statex morphine for breakthrough pain. I've had to increase it once in eleven months and she almost wouldn't do it. I thought she just doesn't understand how much pain I'm in. I would like to know if anyone is using something else that is working better.

aj said...

Thanks for all your comments. I'm replying in a new post here:

Small syrinx, big pain, faulty reasoning.

aj said...

Danette B.: did you get screened for Chiari. Chiari and syringomyelia often wait for some traumatic event to become symptomatic.

Minus the bump on the head at work, you'd probably be feeling a lot better. It's a common story.

lydia said...

Yes I was screened for Chiari and no there is no Chiari.

Anonymous said...

I have a Syrinx that was found 5 years ago. I have been seen for chronic pain for 15 years. Have has some brackus cages put in my lower spine. That helped the sciatica , but nothing else. My Syrinx goes from C1 to T12 between t8 and t10 it takes 85% of the interior space. We believe it came from one of my motorcycle crashes maybe as far back as 1976. T keep seeing info on small Syrinx. I am interested in info on people like me that have long ones. I have pain and several kinds of sensation problems. I get facial pain at times and some breathing interference. My left leg is always in pain and at times feels as it a very sharp hot wire is in the center. I have a right arm that hurts down to the two small fingers a spot near the "wing" that is very sensitive to touch I have had the left hand get the same pain. Am now in a narcotic program. I have been in it 4 years.

Anonymous said...

Hi Darlings!

I´m also a sufferer.Found out yesterday about the leaking sac I have. Doctor asked me if I wanted a MRI. I said no. I´m so f*cking tired of doctors.
Just letting you all know you have a spinal sister in Sweden:)!!

Unknown said...

I have a small syrinx in my spine and the biggest symptom I have is chronic back pain in my mid back.
Do you think this is definitwly caused by the syrinx? That is all they find with the MRI's.
Pain meds do help the pain.

Thanks for answering!

aj said...

We do have to be careful to not confuse correlation with causation. The small syrinx may or may not be the cause of your lower back pain. I will say that this was one of my first nagging symptoms and that I've slowly progressed since then. For me, it has led to a set of symptoms would be really hard to say is not related to the cord pathology (i.e. because of dermatomal cues, etc.).

Another thing to consider is that even if physicians agree that the syrinx is related, their treatment options are slim. Surgery is really a big risk that is not warranted for any semblance of mild symptoms. We still don't even understand the underlying pathology of this disease ("idiopathic SM", which I'm not convinced is as simple as a tight filum). Chiari +SM is understood better but still much work to do.

Anonymous said...

Hi,
I was in a car accident and my 8 year old twins were in the van. We got t-boned at 50 miles per hour and my son smashed his head against the window and broke out the window and from that day on started having these weird neurological problems. First he vomited the night after the head injury and then he started having paresthesias down his arms and legs, his vision started not being able to focus and he has weakness in his legs, car sickness and a number of other neurological symptoms. He has chronic headaches since the accident. He also has been unable to have any type of collared shirt touch him around the neck. It makes him so uncomfortable that I can just see it on his face that it is bothering him. Sometimes I just want him to wear it and he cries because its so uncomfortable for him. In October of 2007, at my insistance they did an MRI and they found he has a small synrinx 2 mm at the largest point. But they have just insisted that this is nothing to worry about and this isn't even a syrinx, but a "normal variant" I don't buy it at all! Even the insurance company who we are trying to settle with is saying "so what he has a few headaches and his legs are weak, that's not our problem" It is extremely frustrating. We feel in our hearts something is there. We had a perfectly healthy, active boy before 03/22/07 and now he has strange neurological symptoms all the time. We feel like when we go to the doctor's office that they think we are overreacting or making it up but my son is not one to complain and two and a half years later, he is having these issues and we are frustrated. We live in Tucson, AZ and we are looking for a neurologist who can follow him. If anyone has any ideas, please email me at sgallego72@yahoo.com and give me any names for good pediatric neurologists in Phoenix. We have exhausted our options in Tucson. Thanks!

Marie said...

Hello everyone,
I cried when I read how long some of you have been living with your syrinx. I was just diagnosed 6 months ago and it feels like an eternity. I have been to Barrow Neurological Institute in Pheonix Arizona and saw Dr Wanabo. He was of absolutely no help. I feel like no one understands what this feels like. I have so much pain the only reason I get out of bed in the morning is for my three young children. I am despirately looking for a neurologist that is familiar with this condition. I am interested in surgery, because I have to try something. I have had three repeat MRI's and each time the syrinx is growing larger. Please, if anyone has found a good doctor and/or surgery that has helped please e-mail me at marietwyman@yahoo.com. Thank you and god bless.

jodySM said...

Hi everyone,
First of all, I am so sorry that you all are going through this. You're not alone. Syringomyelia is a very rare spinal cord disease but there are others out there who have developed an amazing website! During my personal search, when I was first told what I "might" have...cause they didn't even know what it meant..lol. Well, I found this site and in order to read the blogs I had to sign up. So I thought, what the hell..I'd never done that before. Well, when i received a personal email from someone responding to my email with such love and understanding...I just cried and cried. I felt as though I'd finally found where I belonged and I wasn't alone anymore. If any of you are interested, you can find the site at www.smawareness.ca I hope to see you there. :-)

Anonymous said...

Hi all. I am sorry you are all going through this pain and suffering, but I admit i am a little glad i am not alone. I slipped and fell 2 years ago and have had most of the symptoms you all have had since them. I have been in the hospital at least 10 times since my accident amd gatd gad at least 6 Mris. finally on this last one they found a Syrinx. it is small 1 mm but it is 1cm at its greatest diameter. it extends from my t7 to t 8 to the Conus. i also have 2 t6 t7 herniated extrsion pushing on my cord. i have weakness and burning in my legs almost constantly and I finally found a doctor not afraid to treat me with the rain meds i need. i also found a surgeon who knows what he is doing. dr. Daniel lee. i live in Vegas so anyone close to here who wants more info can email me at Saletra40@gmail.com i hope you all get better very soon

Anonymous said...

I am a registered nurse that has been recently been given results of an MRI done on my neck for severe flare ups of what we orginially thought was arthritis in C4 and C5 discs. I've just turned 40 a few months ago and was rear ended 2 years ago and the pain begain shortly after. Severe pain, radiated to my shoulder to the middle of my deltoid which is nauseating at it's worst. I do not sleep even taking celebrex 200 mg daily and Tylenol #3's. Results of the MRI showed again the small amount of arthritis and a small syrinx maybe 1mm x 2mm. I'm told both arent that concerning and the syrinx is too small to cause any pain. But why did I go to the Dr and have an MRI done in the first place? Was it because I was feeling fantastic? This is unbelievable. Firstly I'm an RN that worked on a Neuro unit for 4 years and I've never heard of a Syrinx before my recent diagnosis. Googling it is the worst thing I could have done now seing everyones delimma regarding this thing. I always tell people to never google for medical inquiries but since I had no idea about this I had to. I asked my Dr if I should stay away from working out hard or doing heavy tasks and she said not to worry...now to see that I can end up with severe issues it scares the hell out of me. I also get the headaches daily, and sometimes feel as if I can hear fluid swishing around my neck or crunching. I have 2 kids which are 5 and 1 yrs old, What's in store for me here? There needs to be something we can do? Does anyone know any non invasive way that helps pain or relieves this sack? Does Chiropractic help or hurt it? This is nuts...

Anonymous said...

I am a 25 year old female and also have a syrinx. Mine was found after a slip and fall injury in Jan 2007. Afterwards, I had increased paresthesia in my upper extremities so they sent me for C/T-spine MRI and found a syrinx (no Chiari) from T7-T12, 5 mm across.

I have had chronic low back pain since 1998 when I was a competitive rower. Since I had to stop rowing due to my back, I got depressed and eventually became bulimic which most likely did not help the syrinx. The syrinx has not expanded at all so Dr. Ellegbogen's office here in Seattle wouldn't even schedule me for an appointment.

However, I have had increasing numbness and tingling in my legs, nagging right sided abdominal pain that has been fully worked up by gastro and OB/Gyn, constant headaches, neck pain, and of course the low back pain.

I am interested to know if anyone else has a history of bulimia and syrinx or has any GI component with their symptomology?

I am currently in the process of applying to medical school... if they let me in, at least there will be one doc who knows what it's like!

For chronic pain management, there is an amazing book by some David Butler called "Explain Pain" also a good one to manage stress by Jon Kabat-Zinn called "Full Catastrophe Living." These have helped me a lot. Best wishes to everyone out there!

Anonymous said...

Hello All,

I have been fighting an uphill battle for about 3 years with my family doctor. She didn't believe that the headaches I complained about were anything more than migraines. I fought to be referred to a neurologist (I'm Canadian, so I needed one). He sent me for an MRI and found a thoracic syrinx. I have numbness in my left arm and left, sometimes in my face. I have difficulty swallowing at times. I have constant neck and back pain. I used play soccer and workout 4 - 5 times a week, now I can only workout for about 20 minutes at a time. Also, my vision has changed... has anyone had a change to their vision... if you have please let me know. I would really appreciate your support! The worst part has been the terrible migraine headache (with aura) that have come with this!
It seems as those we have to demand to be cared for. No one believes you! My doctor told me I had anxiety and prescribed me paxil!!! I thought I was going nuts until I got my MRI results! FINALLY!

Anonymous said...

D.S. Boston area

In May 2009, I was stopped at a traffic light and was rear ended by a van-like truck which had to be going approximately 40 - 50 miles per hour and it me without braking (or so I was told - I was knocked unconscious). I was in a Grand Cherokee Jeep (monster car) and it folded like a straw. The ER called it severe whip lash, but with no feeling on my right side and barely able to walk, with the assistance of my husband,I knew something else was wrong. I returned to the ER one week later, sent there by my PC, as he suspected a stroke as my right side was no better. An MRI was done two months later. You see, this was a worker's comp. case and an MRI was not approved until late July 2009. The MRI showed a "small syrinx from C3 to C7". My neorologists, three separate opinions in all, have all been similar to yours. "It's a small syrinx and I do not believe your many symptoms are being caused by it - I believe it is musculoskeletal." One and one half years later, I am still not working and continue to suffer with many symptoms. I have neck and shoulder pain, have about a 30 - 40% loss of feeling throughout my my right side from head to foot, numbness and tingling right arm, hand, and leg, have weakness in both legs and arms, falling, dizzyness and neuropathic pain in right arm down to fingers and pain along my left leg and lower back. I've lost fine motor skills in my right hand, cannot pick up anything heavier than 5 pounds with right hand (have pain in right hand and arm if I do), dropping things all the time from my right hand, cannot even think of fast walking fast let alone jogging which I did prior to my accident. I trip constantly and have to be very careful on stairs, holding rails or I can fall, which I have done due to numbness on bottom of right foot. I have tried many pain medications which do not help and I don't sleep well as a result of pain. I have been in contact with the American Syringomyelia and Chiari Alliance Project (ASAP) and they have given me many answers to my questions about syrinx. However, there are only two doctors in the USA who are experts in this field and they are in Miami and Colorado. You can google ASAP and get some support and helpful information but you won's find a doctor in your own area who can understand and treat you for syrinx. I know how discouraged and frustrated you all are. I cannot go back to work in my former capacity and my workplace hasn't come up with any accommodations for me as yet so that I can return to work. Workers's Comp. wants me off and I really don't feel I can return to full time work anyway. I feel much like all of you who write in this column. I don't know what else to do, but I do have an attorney who is just as frustrated with the lack of knowlecge and professionalism of local neurologists and I live in the Boston area. So much for a highly esteemed medical community! My thoughts and sympathy are with you all and if I find any other information in my search I will certainly share it here. Stay hopeful, take care of the health you still have and keep trying to educate your doctors - flood them with any information you have on syrinx and maybe, just maybe, they will climp off their very high opinion of themselves and commit to learning from the experts in a
field they know nothing about but pretend to.

Cindy said...

I have a syrinx that extends the entire length of my spinal chord, but is only 2mm wide at its widest point. It most likely happened due to a vertebral fracture and it was discovered 6 years ago. I have had chronic for years and it seems to be getting worse, even though the syrinx has stayed relatively the same... I've had docors tell me all sorts of things, and quite a few dismiss it all as just 'a mystery'. And those that do believe me say I just need to learn to live with it. I finally recently stared on some nerve blocking meds, and they work a bit, so it's a start. It's good to know there's others out there with similar circumstances. It gets depressing and frustrating.

Anonymous said...

I have a 16 month old that has been sick for a very long time. He has eating disability, bowel issues and something appears wrong with his legs. We have had to beg several specialist to get help. my pediatrition said i am looking at a happy healthy child who has just been through a few minor cold and flus not toworry. and another eating specialist who wanted to snd me to a therapist to teach me how to introduce foods to my child. I have a healthy 21 year old and 13 year...APPARENTLY I have no issue introducing food!! We found this specialist who finally agrees and through 1 surgery and 1 MRI they feel they found this problem! Tomorrow we go for another MRI to do a complete diagnosis. Its sad and very hard to except that he has to go through this. Even an MRI is a big deal because of his age they have to knock him out =( I feel your pain and wish I could take this all away for all of you. And I wish Drs wouldnt treat us like we were crazy, when they can't figure things out!

jo said...

hi, I have been diagonised with a syrinx 3yrs ago. my first sympton was headaches and my vision in my right eye was really blurry. when i woke up i walked down the hallway and needed the wall to hold me up right as i felt like a was intoxicated. my syrinx is C2 - C4 and i am so sick of MRIs once a month that I dont go anymore, as the doctors just say the same thing.... none of my symptons ( numbness in legs ,arms, cramping headaches, hard to swallow, forgetting things) comes from the syrinx.... I ahve good days but when i have bad days THEY ARE BAD.... some times I can hear crackling or it sounds like popping in my neck... sleeping is some times interupted as the numbness in my legs gets so irritating...

Anonymous said...

My MRI scan looks nothing like any I have seen on-line: There is no defined soinal column, surrounded by white. (Liquid) It's all dark...haven't seen neurosurgeon yet but known that extra MRI scans on whole spine have been ordered, and "syrinx" c4-c7 has entered my vocabulary for the first time, although that's because I caught a glance of the MRI (C) report.
In bad back pain, going down right arm. A month now....Do ALL normal MRI scans show up the white liquid on either side of the spinal cord? Or can some be dark like mine?

Anonymous said...

My Neuro doesn't think that my Syrinx is causing all my pain and issues either. Bit they keep telling me I have all the symptoms of M.S. but my MRI comes out clean? ??? I have alot of trouble walking and my legs and back burn and feel like they are on fire along with feeling like they are being shattered into a million pieces ......

Anonymous said...

I am same as you are..i just got dianosged syringomeylia in thoraric spine...causing me a alot of pain few times a week...they put me on meds...but it seems to me that doc dont even know what to do with me..and my neruo said that i should have any systoms at all...im pissed.

Laura said...

I have just found out that I had a Syrinx in my neck in 2005 from c2-c6, the first MRI reported as a hydromyelia at 2mm wide, and 7.5cm long that was April 2005 , I had follow up in Nov 2005 it said it was a tiny syrinx measured at 2mm wide by 3.5 cm long, then a few weeks ago another done measured at 2 to 3 mm wide by 3 cm long, that it was more related to a central canal dillated verse a tiny syrinx. I had only been experiencing symptoms ever only after stopping a Medication that caused a toxic reaction to the Brain , all the symptoms I have been having has been all related and common to coming off that Med , but recently abt 3 mths ago I had a small fall , I landed on my knees and caught myself by my hands , I only hurt my left hand , just more so a bruise and some swellingthat lasted a week, no big deal no other injury in my life prior to or after , well a abt 3 weeks later I got into my hot tub and aimed the jets directly at and on my neck and back, since then I have been experiencing alot of muscular symptoms more then unusal , again its still common to coming off that Med , but I never had these symptoms steady like this none stop for3 mths straight. The symptoms are ...hands dont feel texture , I had this for abt 7 mths now, but recntly my neck is extremly stiff,spasms, wrist feels sprained as well as my ankle on my left side mostly , I feel like I am walking on crushed bone , all left side same side I hurt my hand on over 3 mths ago, a constant pain in my arm, sharp stinging, I feel like I am eating crushed bones in my mouth , I am gng to see a NS in April, my Dr feels its not related to the syrinx at ll as well as the last Neurologist said NO way . I am wondering if its still a reaction from coming off thta med or if its the syrinx? I never ever had any symptoms ever beofre coming off that med, and these new symptoms only got intensed after the hot tub. The syrinx on the MRIS all 3 look exactly the same except shorter. Any comments please.

Laura said...

I have just found out that I had a Syrinx in my neck in 2005 from c2-c6, the first MRI reported as a hydromyelia at 2mm wide, and 7.5cm long that was April 2005 , I had follow up in Nov 2005 it said it was a tiny syrinx measured at 2mm wide by 3.5 cm long, then a few weeks ago another done measured at 2 to 3 mm wide by 3 cm long, that it was more related to a central canal dillated verse a tiny syrinx. I had only been experiencing symptoms ever only after stopping a Medication that caused a toxic reaction to the Brain , all the symptoms I have been having has been all related and common to coming off that Med , but recently abt 3 mths ago I had a small fall , I landed on my knees and caught myself by my hands , I only hurt my left hand , just more so a bruise and some swellingthat lasted a week, no big deal no other injury in my life prior to or after , well a abt 3 weeks later I got into my hot tub and aimed the jets directly at and on my neck and back, since then I have been experiencing alot of muscular symptoms more then unusal , again its still common to coming off that Med , but I never had these symptoms steady like this none stop for3 mths straight. The symptoms are ...hands dont feel texture , I had this for abt 7 mths now, but recntly my neck is extremly stiff,spasms, wrist feels sprained as well as my ankle on my left side mostly , I feel like I am walking on crushed bone , all left side same side I hurt my hand on over 3 mths ago, a constant pain in my arm, sharp stinging, I feel like I am eating crushed bones in my mouth , I am gng to see a NS in April, my Dr feels its not related to the syrinx at ll as well as the last Neurologist said NO way . I am wondering if its still a reaction from coming off thta med or if its the syrinx? I never ever had any symptoms ever beofre coming off that med, and these new symptoms only got intensed after the hot tub. The syrinx on the MRIS all 3 look exactly the same except shorter. Any comments please.

Anonymous said...

Hi all... I am a 43 year-old male and I have a Syrinx the complete length of my spine from a trauma to my c5-c7 9 years ago in 2003. I am thankful that I have never had any pain from it, but I have varying degrees of numbness and weakness all over my body. I have not had surgery for the syrinx yet, but I am now barely able to walk, so I think it is time. I feel for all of you that experience pain along with the other symptoms. But, what really makes me feel for all of you in the USA is having to deal with insurance companies that won't approve MRI's and surgeries! I live in Canada and have had over 30 MRI's in the last 9 years. Having to fight for treatment with an insurance company would probably send me over the edge... not to mention put me in debt for the rest of my life if I had to pay for them myself! You guys should have listened to Obama!

Anonymous said...

Hey anonymous 43 year old from canada- just as an fyi - my insurance pays for everything!

For the rest that post here, this is clearly a case of medical stupidiity and/or insurances lobbying the doctors.

I have a syrinx and yes my vision is deteriorating and my ability to concentrate is decreasing, plus all the other symtoms, of numbness everywhere, all limbs, hands feet ankles.

My PCP was the one that acutally pointed it out to me based on a recent complete MRI. He advised me to monitor the syrinx very closely as this could (based on progression) lead to complete function loss in the limbs, hands, and/or other body parts.

The spinal cord is one of the most essential part of your body and if it has ANY issues then good luck!

I find it unequivocally ludicrous that so many doctors dismiss syrinx as an non-issue so that insurances can retain their wealth at the consumers expense.

Insurances rather pay hundreds of doctors 100K to keep their mouth shut vs. paying a million (or whatever the policy limits are) each time a person comes forward with a syrinx.

I went to several NS + OS and each time I get a different answer which is ridiculous! Either the condition has the potential to cripple me, and/or the potential to reduce my life expectancy or it doesn't. Based on the complaints I am reading from others on multiple sites it is highly correlation and seems to be the causation of greater problems. Sure one can argue the contray but science has yet to come with a 100% certainty to argue either way!!!!

Until then it will be the same old story of insurances getting rich and the consumer getting screwed out of his enjoyment or life or life expectancy in general due to some "could be" or "could not be" science.

Anonymous said...

I had chiari surgery in 2009 and am still having severe back pain with stiff neck and shoulders. I am set up to have an MRI to see if they can find anything such as a syrnix that could be causing the pain. My neurologist that I have been seeing since the surgery does not do much either so I called the doctor who did my surgery and told him all the symptoms I was having. He was suprised that the other neurologist could not see me again for so long and he is the one who ordered the MRI. It seems that he is the only doctor who cares. I dont know what the MRI will find but I am tired of hurting and hope they can do something to help. I do not have a job any longer because I have had so much pain. It has really took a tool on my life. I have two young children that I need to be able to take care of.

Anonymous said...

I am just as frustrated as the rest of you. I only found mine (c3-c7) because I was training for a marathon. I would get a 3 day headache after every run and the more I ran the harder it got. Finally I was unable to control my gait, I felt like a rag doll so I went in to a sports medicine Dr. I ended up with an MRI and neurosurgeon. he told me my syrinx was too narrow for me to even notice. Well I have run all my life and never had any problems. He prescribed a cortizone injection so I "could get back out running". Why on earth would a neurosurgeon tell me to do something that would make it worse and tell me its not the problem in the first place. I get horrible migraines, arm and hand numbness and pain, and stiff neck more often than not. Has anyone found something that helps? I doubt any Dr in my area will.

Anonymous said...

Anonymous in D.S. Boston area,
What is the name of the Colorado Dr's name? I have found a hospital in Denver that has done successful spinal cord tissue transplants. I'm hoping its the same person. I would be willing to travel and "fix" this before it gets worse. I'm barely 33 and can't pick my young boys up without getting a migrane and having you hand and arm go numb/hurt for days afterward.
Thanks

anonymous said...

My 17 yr old son was recently diagnosed with SYRINX!! We were told by his orthopedic Dr that it could lead to Paralysis and/or brain damage so we take our son to one neurologist that tells us the same thing & he seems him for blood work & asks us to return in 2 weeks, we go back & he tells us that he thinks my son is just wanting narcotics!! I was extremely upset!! I can't believe that he would even suggest that I would be taking my son to all of these MRI's, Bone Scans, blood work, numerous Drs just to get my son MEDICINE!!! He used to play football & was very active & now he is always in pain!! He gets headaches at least TWICE a week, he has
Small nodules on his neck & back (from what I understand that could be coming from the excessive fluid on his spine that has to have somewhere to go), the muscles in his neck are so tight I can't even massage his neck the list goes on & on...I'm tired of going to Emergency rooms!!! We are scheduled for an appt with another neurologist for a 2nd opinion but I honestly expect the same answer that we've been getting all along: SYRINX ISN'T PAINFUL!! I don't understand how they can say that unless they've walked in the shoes!! I just don't know what else to do but I hate to see My 17 yr old son in so much pain & basically living an INACTIVE LIFE!! What else can I do?? Any advice would be helpful!!!

Anonymous said...

I have been in 2 car accidents in the last 4-5 years. The first one left me having to get a fusion at L5-S1 in 2011. then last apirl, I was stopped at a light on a hill and some guy hits me from behind. I go to the hospital because one Im in pain and 2 I need my lumbar spine checked. I get released, but fortunately I have an appointment with my NP ortho specialist the next day. She reviews the xrays and thinks that something might be fractured at C4. Into a collar and ct scan, mris everything. Turns out I have this little spot on my spinal column, a syrinx. Well she tells me I need to go see a nuerologist, and it could be MS. She also says it could be from the accident, and divers (jumping from high boards) who dont enter the water right get this alot. I got migraines before the accident, but I managed to work. After I could barely move my arm and neck, could not sleep unless my neck was perfect, and could count on one hand the days I didnt get a migraine each month. nuerologist ruled out MS (Had already had testing done so I knew he would) and said that he believed that the car accident was probably how I got this injury. My left side of my face is going numb, lots of pain and nothing helps. Then the nuerologist says he can help with the headaches. OOOOOO... My insurance covers botox injections for migraines. Yes. I was nervous but after the first time, I could move my neck, my shoulder, no pain going up my head or down my arm, no numbness. The treatment called for him injecting not only my forhead and head, but my NECK and SHOULDERS too. WOW what a difference. The car insurance company is fighting me about my settlement, but hey, one more injection and I probably can return to some kind of work!!!!

Kstew said...

I too have a "small" syrinx that goes from T10 thru L1 approx 2.7mm wide and 6.5 cm long. I have constant pain in mid to low back, sometimes tolerable other times severe. Lots of weird symptoms like crunching noise in back of head, fluid swishing noise in L ear and earache when ear looks apparently normal. Headache at the base of skull in am. I NEVER sleep well. Bladder leakage, weird feeling in feet and legs (almost feels like I've had my feet dangling in water.) Two neurologists have said surgery not warranted so they just send me on my way. PCP has tried Cymbalta and Neurontin which I was unfortunately allergic to both. Now on Savella which is useless and she acts like I'm a drug seeker because I ask for one hydrocodone per day. I take 800mg Ibuprofen in the am and usually by 2 I need something else just to get thru the day. If I take more ibuprofen I start bruising like crazy. She has now referred me to pain management because she does not agree with keeping me on any pain meds. She also pointed out the the neurosurgeon was "not impressed with my syrinx". Sooooooo frustrating! Oh yes the scariest symptom I have is that at times I feel like I can ot get a big enough breath into my lungs. I was given Xanax as they feel like its related to anxiety, but now she doesn't want me to continue that either!

Anonymous said...

Please...please someone respond to me. This is the ONLY site that I have found with information that relates to my 11yr old daughters issues. First off she has had leg pain and weakness for 3 years but her normal physician blew us off saying that it was just growing pains.... finally her pain has gotten so bad that she was unable to bare her own weight and get up and walk in the morning... after pleading with her doctor he sent us to an orthopedic.... after a large battery of tests the orthopedic concluded that her pain was not bone related....he said it was neurological ordered an MRI, and sent us to a neurologist....the neuroloist did 5 additional MRI's and concluded that she had a syringomyelia, with a syrinx at t5-t8.... she does not have any additional cysts or tumors or chiari malformation....nor has she ever had a back injury..... she got so bad that she was unable to attend a full week of school due to the pain... so she was placed on gabapentin...the neurologist sent us to a neuro surgeon...... who has completely contradicted what everyone else has said.... he has even gone to the point of saying that my daughter is faking her pain.... even though the syrinx is right there in black and white....she is in so much pain....we dont know what to do.....any info helps....Facebook me (April Victorine).....or email me at Apewillshowers7877@comcast.net thank you

Anonymous said...

i live in Australia and i have a syrinx also. My doctor told me to not do physical exercise. or strain type stuff . But i got the feeling they have no clue . And after finding this blog , i am angry and frustrated. I have the very same question as you. And was told not to do too much physical work or exercise.
I know this does not help you much. But it is what i was told by one doctor. i have seen three including a surgeon. But i not sure they have much of a clue.
My email is shadowman32au@yahoo.com. my name is steve. Feel free to write if you need to and maybe we could share ideas or information, we may come across.
wish i could be of more help mate

Anonymous said...

Well reading this both frustrated me and caused me some anger. I felll over at work and since then have had lower back pain. At times un bearable. The doctors(more than one have prescribed anti inflammatory pills.) Also blinding headaches. pain in both legs and many other symptoms. Went for M R I. Came back with syrinx occupying 75% of the thoracia spine .
Just wanted to add to this blogg. i am in Australia. And i feel like nearly everyone on here that the doctors don't know much about this. one doctor told me he had never heard of it. another went to the doctors(workshop manual.).
But after reading this at least we all know that its real and maybe by printing this off and showing your doctor they might listen.

Anonymous said...

I truly feel for all of you. I have been diagnosed/dealing with SM for well over 12 yrs+ ago & have dealt with a whole lot of doctors since. I received mine because at 15 my horse ran into a moving car going 40 when someone decided to honk a horn & I was in a coma for 2 weeks. Yrs later after surgery for Crohn's when I didn't get better my doctor sent me to an infectious disease doctor who did an MRI. When he gave me the news he apologized to me. Then I was lucky & saw a Neuro who had personal knowledge of SM. Now I am seeing a PCP who really doesn't know much at a large HMO, but I am still on a regular course of pain/muscle relaxers that I came to them on. I have syrinxs that are in my thoracic spine from T-1 to T-7 & T-7 to T-11 widest point being 4mm, along with degenerative disc. disease in my lumbar & cervical disc protrusions.T3-T5 small Hemogiomas. I am having problems with my ribs (feels like there being pulled out 1X1 & snapped off/broken) legs/feet/hips, headaches, hands, wrist, arms, etc. I have joined every web site over the years looking for others that share this joyous condition too. Anyone that doesn't have it just cannot understand what we go through on a daily basis. The never ending pain & the weakness that just seems to get worse no matter how hard we try to keep it at bay. Trying to get up & do anything is really hard. I have had 6 major surgeries for crohn's & female problem but no have no desire at all to have them messing with my spine after all the information I have heard in the past of the outcomes & the part of it not fixing it. In regards to meds it is getting harder to get doctors to prescribe now because of the big problems of teens & others dying from prescription overdoses. As a parent I truly cannot imagine what they are going through & my heart breaks for them. Supposedly per my pain doctor their HMO & feds are cracking down on pain meds?? Unfortunately for pain patients-more problems getting medicine for legitimate pain. Like my Neurologist told me when I worried about taking pain meds at the beginning: Pain Medications are made for pain patients with legitimate pain. No one would ever think badly of a diabetic for taking their insulin would they? It's the same for a pain patient taking their pain meds, as long as they are taking them as prescribed for their pain & not over taking or anything else. Pain patients rarely or ever get hooked on pain meds. They do not get high or take them for the high. The only reason they take the medication is to have some sembalance of normalcy. I also live on heating pads-to say my bikini modeling days are over is an understatement. I shock the doctors & others who see my back & stomach. I have scaring from the heat-you do what you have to so you can survive this fun time. Hope everyone is making it as well as is possible. Take it day by day.
I have a blog also; Life of pain on this same site - eBlogger. If anyone wants to talk about anything SM related, my e-mail is: www.spongebob1959@hotmail.com

Unknown said...

Heeyy!! You sound just like me.... and just like me u were told u don't have chiari.... but that pounding u speak of.. same here... my twin sister has sm too.. and the doctor she found actually diagnosed her with chiari type 0 .. he says this type of chiari is hard to see on MRI because there is no protrusion. The hindrance of CSF is caused by arachnoid web. 98 percent of doctors see the web as space...on MRI that is. But all the other indicators are there. Can u talk to me about med. School. I am going back to college for premed. I honestly think I might be dying. The spasticity along the spine feels like cancer or necrotic muscle. Plz send me a message arrenadesign@gmail.com

Anonymous said...

yer Yenntiamsat 624195Wow! Just found this blog. I am so sorry so many are suffering from this as I am. On the other hand, it really helps to hear from others with such similar stories! My research so far says this is very rare. Figures. My whole life has been very rare. I also have Mixed Connective Tissue Disease and Lupus, as well as other autoimmune problems. I too have had my vision affected. I too have been blown off by doctors, but MRIs don't lie. And neither do I. I have many injured and blown discs, from cervical to bottom of spine. My neck is in precarious shape. I've lost so much muscle and weight. Just got a new neurologist who is very sharp. But may have some insurance problems. Last neurologist was a bitch. She did help me some back when, but no longer. Even said to my shrink that it was somatic! Neck hurts lots all the time, have been crippled since "89, and it is getting worse. I do do stuff as much as I can and am never sure what is safe. I know I've pushed it over the brink at times. But trying to build muscle as I disappear. I too feel as if I am dying. I am so weak. One of the injured discs in my neck is compressing the spinal cord. I too get treated as if I am a drug seeker. There was a time you couldn't have gotten me to take any drug. I am, as it turns out, allergic to so many. Am mainly taking hydrocodone for pain. Medicinal weed actually helps. I was surprised. Less strong versions that deal with body pain. Really does.
Please keep sharing your stories and info! I've felt so alone and not understood for so long. Feel free to contact me at:takusnisni@comcast.net
Hang in there. Bio-feedback helps. Every day is a new day with new possibilities. Thank you all! RR
P.S. My syrinx is thoracic, 6-7 when last imaged years ago.

Kgkjj5 said...

Ok i was just told daughter who is 12yr has a syrnix and several bulging discs in her neck. This is totally out of left field esp since.the only reason i had an mri done of her whole spine was because i have SO many back issues i am 75% metal i have spinostenosis (i was the youngest person to ever require surgery for it) my surgery was considered experimental i had 2 back surgeries when i was 26 n 27yr, anyway this is why i pushed to get the mri for her so we would have a base line to compare to if needed down the road, the mri tech said that her ped dr should have the results by the end of the week it was mon. I was in no hurry as i wasnt concerned about anything within an hr of the mri her ped dr was calling ne with an appt to see a neurosurgeon saying she has several bulging discs and a small syrinx we go to the nerosurgeon on oct 24,13 to see what our next step it. So i have been doing a LOT of research and some of the symptoms she has had, a few weeks ago she wad complaining that her right hand felt numb for 2days i just thought she slept on it wrong i did think it was strange it lasted that long but it went away and i didn't think anymore of it until now she had also in the past said that her foot felt numb. I havnt told her to much i want to see what the nero dr has to say b4 telling her to much

Anonymous said...

Get a new neurologist! I had a similar situation with my first neurologist. He was a middle-aged physician. When he forgot - for the third time - that I was seeing him because I have syringomyelia, and insisted it was for headaches - I dropped him. I found a new neurologist who was very young. He went through my history, and when I was not forth coming about a number of things I was experiencing, he started asking me if I had experienced specific things. Basically – the things you mentioned with a few additions. When I told him that I had experienced all those symptoms but had not mentioned them because my other physician said they were not related to the syrinx, he informed me that yes they were related and that when I needed additional medication for pain, involuntary movements and the rest, he would be happy to do what was needed to keep me comfortable and as mobile as possible. He said there was little else that he could do unless surgery was required. My opinion is that many of the older neurologists don’t take time to keep up with new information. Some of the best advice I received, was to seek out a neurologist who specialized in syringomyelia.

Cyndi Hill said...

I have a 6 yr old daughter who has 2 syrinx. One in her neck area & the other in the chest area. The dr has her doing physical therapy. Because he believes her pain is not from the syrinx. He says it's not big enough. She just had her 6 yr old check up and was told she needs to see an ophthalmologist. I'm frustrated and emotionally drained.

Anonymous said...

Hello there. I completely understand you as I too have syrinx. I too receive epidural injections but you must eat careful as they can be dangerous even when it looks all so easy when they do it it can compromise your immune system as it did mine and just add to more illness, weight gain, and they can just stop working.most doctors do not know about attics and their symptoms so there only answer is because of their egos getting in he way instead of actually educating themselves even further, there answers to your question will always be, No, it's not coming from your cyst.

Anonymous said...

Hello there, i am a 16 year old female and have been seen frequently from neurologist, and many other doctors, my bladder does not function properly, my nerves that send messages to my brain about when my bladder is full are not functioning. Last year i had a full body MRI scan done, and they found a syrinx in my spinal cord. I regularly have headaches, and am slowly developing loss in my legs, my doctor doesn't want to do anything about it. He just wants to "watch it" over the next five years and see how it goes. I always get hot and cold flushes. My doctor says he doesn't want to go in a remove the syrinx because it will "do more damage than good" because there is a very high chance of being paralyzed. Im only 16, i dont know how to deal with this, i have read a lot about a syrinx and just knowing that i have to live with this, scares me like crazy :(

Anonymous said...

Hi.i have 11mm chiari and c1-c6 syrinx.causes me horrendous back pain and also recently i have tongue tremors and get sore toes

Anonymous said...

RDr. John Oro is one of the most outstanding doctors I have encountered since being diagnosed with a syrinx in 2006. He performed a tethered cord release in 2008 which greatly reduced my bladder symptoms, but now new symptoms have appeared over the last year. I would not see any one else for this often misunderstood neurological condition. My heart goes out to all those who are suffering. There is hope. There is healing. Please see Dr. Oro! Happy New Year to all! Amy R.

BlarneyWithEloquence said...

Dear aj..I absolutely TOTALLY agree with everything you say.

In 2005 I was a healthy 53 yr old, walking everywhere and loving life, with my 10 yr old son.

Unfortunately I slipped on water in a supermarket, nothing was seen so I was diagnosed with a pulled muscle!!! What a laugh. Went through pain for 12 months until I could no longer take anymore. Had an MRI which showed a Syrnix at T1-T4. I was told by Neuro the pain I was feeling was the Syrnix developing from the fall.

Here it is 2014 and the Syrinx is seen extending from the top of T3 down to mid T4, tapering at both ends. Max AP dimension 2.7mm. Now there is a horizontal septation in the upper portion. Central canal is also discontinuously prominent (up to 1.1mm) from C6/7 down to T2.

I too have pain in the neck also and THE SYRINX has effected the whole right side of my body down to my right toe!! It is the burning, burning pain which is hard to tolerate.

I believe you when you say "it is 'hard' to find a doctor who believes that the syrinx (or its cause) is the root of my symptoms". They don't want to know;#! but why are we like this now when we were so healthy prior to having the Syrnix??

It is so terribly frustrating and downright disgusting I believe. The condition is put in the "too hard basket" because the "so called" specialists cannot understand it themselves.

I believe the worst of it is the spasticity in the body. I have mine in the right leg mostly and the burning, searing pain all up the right side of my body. The pain halts my thoughts and vocabulary which is so embarrassing but we are supposed to deal with it. I exercise in my back yard walking back and forward with my walk stick/walking frame and the only time I leave my home is via taxi to visit my GP.

Well I can't deal with it anymore. I am just about at the end of my tether. I have had Scenar Therapy, Laser Acupuncture, Physio, Osteopathy, facet blocks ~ I could go on and on but you get my drift. Surely there has got to be an answer but FROM WHOM!!

I wish you and everybody who has commented on the blog the best of luck in their endeavours to find relief.

If I have any luck at all I will surely post it here for all to see.

Take care everyone and my thoughts are with you all.

Cheers...fierymars

riogran said...

I've had mid back pain for 1 1/2 years now and have just been diagnosed with syrinx. No pain killers seem to work. Tomorrow I am have two MRI's. The pain is where my bra is and it feels like burning and/or ice cold. Sometimes the pain is unbearable. I find temporary relief by direct pressure. Thank goodness there is no pain when I go to bed.
I keep trying new meds, anyone know of anything that eases the pain?

Unknown said...

Hello. .I was diagnosed with a syrnix about a year ago by my ortho surgeon. He sent me to neuro and as I was talking ro him and telling him my symptoms I was told that it could not be causing them and if I knew so much about it, that I might aught to treat myself..I felt so alone and felt like I was in the wrong that maybe I was imagining my symptoms. But I suffer daily with severe headaches among other symptoms. I am at a loss because now I have no insurance and cannot find another dr. Who can even look at me.. Just dont know where to turn

Teresa Whitcomb said...

I had a car accident 2 years ago. Hit by someone going 60mph thru a red light. They found the syrinx while doing the MRI for something else. Although I do not have a chiari, they say I was born with it. I have now started getting pain where my bra strap is and have burning and radiating pain, especially when I stand and cook for long periods of time. I tried to get help from the Dr. Ulrich Batzdorf in LA because I am in Portland and there are no specialists that know about syrinx here. I think he is trying to avoid issues related to car accidents. He looked at my MRI and said I have a hydromyelia, not a syringomyelia, and even though he did not see me he said the pain is not related to my syrinx. Seems strange that my symptoms match what I have found online exactly. Good luck to us all. No one will listen!

Anonymous said...

Hello everyone. I also suffer from a Syrinx in the cervical and thoracic spine. I experience horrific pain in the neck, shoulders, mid back and ribcage on a daily basis. The headaches are severe and I also have problems with blurred vision and bladder. I too have problems sleeping at night. It is so frustrating to feel this way daily, but helps to know that others are expressing similar problems. I have been sick 15 years and was finally diagnosed October 2012. I was told by my neurosurgeon that the syrinx's are the root of the pain. Many prayers to all of you with the same issues. Stay strong!

Unknown said...

My name is Curtis I also have the same syrinx in my cervical spine. It was found in 2009 and has continued to grow over the last 5 years. I have seen a neurosurgeon 3 different times. First they suggested therapy which helped at the moment, later traction, and then came to the conclusion that there was nothing she could do. I have tried just about everything under the sun for relief. Most recently the stiffness in my neck was so terrible I tried having a massage therapist work it out. So far that has helped the most. I was very worried at first thinking it would make things worse. Since mine causes severe pain in my shoulder that shots like a arrow up my neck on the opposite side of my head. But it seems to work the best. I have finally found a doctor that is going to send me to Wichita, KS or Tulsa, OK to see a specialist. My suggestion would to fine a good massage therapist that will gently work on the bad areas to relieve some pressure. I take some much medicine and am so mean to my wife and kids at times I am surprised they haven't left. There are days that I think a bullet would be the best option.

Anonymous said...

I too have a cervical syrinx. I have continuous pain. I can sit for only about 20 minutes at a time then I hurt so bad I have to stand up. I can stand for about 20 minutes then I have to sit or lay down. It's impossible for me to find work that would let me lay down to ease the pain and there's only 1 job I know of that you can earn a living in bed, but that isn't legal. The problem is that I need to get social security disability and I'm stuck waiting on SSA. Anyone have any suggestions how to get SSA to approve? I

Marianne said...

I know this is a very old blog post, but I am sitting here in tears because I have been going through the same situation. I have a 3mm syrinx in C3-C5. I have numbness, constant pain, headaches, trouble swallowing. I begged the neurologist to do a lumbar MRI and they have found another syrinx in T11 T12 but the neurologist did not suggest a full spinal MRI to see if I have any more thoraic syrinx. I am at such a point of frustration. Also as they did the Lumbar MRI they found a tumor on my adrenal gland. I feel so hopeless. I'm tired all the time and have gone from working 12-14 hour days to a job that is only 3 hours a day..and even that is difficult. I'm about to lose my home that I love and feel I'm getting nowhere. I'm sorry anyone has to go through this, but I'm finally feeling that I'm not alone.

Anonymous said...

Hello, so far after reading several posts, I feel aweful to see so many suffering with little to no relief. My husband had an mri done on his mid to lower back and one of the findings was a 1.2 cm syrinex omongst other problems. His pcp dr.had an extensive consultation with him and explained why he has the pain and numbness and fatige and said he needs to go to a spinal surgen right away that his will not get better and one day he will wake up and not be able to get out of bed.... my husband jokingly said he feels that way now however the dr said no, I mean literally u won't be able to move if you don't fix this asap. The longer you wait the worse it will get. We are almost certain this was caused by his four wheeler accidant back in sept.2013. Anywho the dr. Has him on some serious meds and I was hoping you could let me know what u take that seems to b helping you. He is in two pain meds one muscle relaxant 600 ibuprophen and rantidine for his stomic. Does this sound like your rutine? God bless all and hope you find drs. That will help and listen and know how to treat you all. I hate to hear anyone suffering in pain....

Unknown said...

Hi. Has ANYONE had a good doctor with great results? Please post your doctors and where you went so others will know where to and where not to go. My 20 month old was just diagnosed and I am in tears...

Unknown said...

I went through 32 yrs of MORON doctors telling me it's in your head, your a hypochondriac to my face-more often unknown to me written on my chart,or they don't know, all kinds of utter bullshit!
The pain, weakness, bladder, balance, pins and needles, numbness, burning sensations with a feeling of warm water running down my back, muscle spasams, etc,
etc.
Finally I was lucky (?) and was diagnosed with MS, 8 lesions in C sec of the brain and three in my brain stem to spinal cord along with Diffuse idiopathic skeletal hyperostosis, Postprandial syndrome, and Sleep apnea all in a one year span.

Anonymous said...

The United States is hell on earth if you have any chronic illness. To the chick who was lucky enough to be born in Sweden: you think you are tired of doctors? Try living here :(

My life is over. I feel like I'm just waiting for death. If there is a God he hates me or probably is Satan.

What is the point in living like this? To the blog owner: how do you work? I'm in so much pain that I have to lie down all the time with my knees propped up. That's my life.

Unknown said...
This comment has been removed by the author.
Mia Ponce said...
This comment has been removed by the author.
Anonymous in Pickens said...

I was injured 3/12/2012 at work. I have Constant burning under my left shoulder blade 2 doctors signed off on it as nerve damage. Well my new doctor wanted me to try physical therapy again. My new physical therapist worked on my neck he herniated three disc in my neck C5, C6 & C7. Since then the head aches I have is far worse then any migraine that I've ever had. My doctor finally sent me to go get a MRI and right behind C5,C6&C7 is a 2x2x8mm SYRINX. As each day goes by the pain gets worse & worse. At times the pain brings me to tears. The pain will start in my neck and slowly take over my head. And then, just the left side of my face and head tingles like I have a thousands needles sticking me. Now my doctor is telling me I need to go to the ER and have a EKG done and that these symptoms cannot be caused by this, that it is probably my heart. I told her I have never had any problems like this until the physical therapist did this to my neck. Keep in mind I am still under workers Comp.

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Anonymous said...

ALL OF YOU SOUND EXACTLY AS I HAVE FELT FOR FIVE YEARS, AND NOW MY FIFTEEN YEAR OLD SON IS HAVING PROBLEMS. I WAS AN ACTIVE, 26 YEAR OLD FEMALE GOING TO COLLEGE AND WORKING, DRIVING MY BRAND NEW CAR.... WAS LIVING MY DREAM!!! THEN.... BOOM IT'S ALL GONE SO QUICKLY!!! DIAGNOSED WITH CHIARI MALFORMATION TYPE 1 AND SPINAL ABNORMALITIES. AND NO.... NEURO DID THE DECOMPRESSION LAMINECTOMY SURGERY. OVER THE FIRST YEAR, HEADACHES RETURNED, AND SO MANY MORE ISSUES AND SYMPTOMS. NEURO SAID THAT I WAS CURED... NO JOKE... AND ALL THE PAIN AND CHRONIC FATIGUE WAS ALL IN MY HEAD. SAID HE COULD NOT DO ANYTHING MORE AND THEY ARE CLOSING MY CASE!!!! TOTALLY REFUSED ANY FURTHER TESTING OR EVEN TO LISTEN!!! FOUR YEARS POST SURGERY AND I'VE FOUND OUT THAT THERE IS ACTUALLY MORE OPTIONS, MORE INFORMATION, MORE PROCEDURES, TONS OF THINGS THAT NEUROS OVERLOOK OR DON'T EVEN SEE LIKE SUBLUXATION (ROCKING OF YOUR HEAD ON YOUR SPINE DESTROYING NERVES, SPINAL CORD, BRAINSTEM, AND SO MUCH MORE)!!! NOW MY 15 YEAR OLD HAS BEEN SEEN FOR A SYRINX IN HIS CERVICAL SPINE AT BASE OF SKULL. HAS MANY MANY SYMPTOMS AND IS NOW GETTING READY TO SEE NEUROS AND RADIOLOGISTS ETC TO SEE EVERYTHING. HE'S GETTING A CINEMRI PER MY DEMAND AS IT SHOWS SO MUCH MORE AND ACCURATE DIAGNOSIS CAN BE MADE!!! THERE ARE CHIARI SURREALISTS ACROSS THE U.S. BUT ONLY A FEW. DR ORO IN COLORADO, HENDERSON IN D.C. WHO SPECIALIZES IN CHIARI 0. YES, ZERO MEANING NO HERNIATION BUT HAS SYRINX OR DOESN'T BUT HAS CHIARI SYMPTOMS. YOU CAN FIND ALL THE ACCURATE AND LATEST UPDATES IN CHIARI AND SYRINGOMYELIA BY READING ON IT, AND DOWNLOADING THE PATIENT HANDBOOK BY SEARCHING IN YOUR ADDRESS BAR FOR: CONQUERCHIARI.ORG OR LOOKING UP DR. ORO IN COLORADO, HEAD OF CHIARI CENTER AND RESEARCH. THERE IS HOPE!!! I GAVE UP AND AFTER GETTING THIS INFORMATION AND FURTHER STUDYING I WOKE UP FROM A HELL TO FULL OF HOPE AND DETERMINATION!!!! I'M ALSO INVOLVED WITH THE UTAH CHIARI SUPPORT ORGANIZATION AND GETTING INVOLVED WITH THE CHIARI WALK FOR AMERICA, AND SPEAKING OUT, AND EDUCATING!!! YOU HAVE TO BE YOUR OWN ADVOCATE!!! PRINT OFF FACTS, STATISTICS, AND EDUCATE YOURSELF TO THE POINT THAT YOU KNOW ENOUGH TO ACTUALLY INTIMIDATE THESE DOCTORS. SAD BUT TRUE... IT WORKS AND YOU START GETTING PLACES!!! DON'T GIVE UP... PASS THIS INFO ALONG AS I JUST DID AND REMEMBER ONLY YOU CAN USE YOUR VOICE AND TAKE CHARGE AND INVOLVEMENT IN YOUR CARE. NOBODY IS GONNA DO IT FOR YOU!!!! ❤ �� ��

Anonymous in Pickens said...
This comment has been removed by the author.
Anonymous said...

Life at a stand still…..
I was diagnosed with a syringomyelia (Syrnix) in 2005 and I also have went from being very active to doing nothing, It has taken a toll on my relationships with my children and my husband. Not that they have left me but because of the uneducated Dr.'s who's care we go under. The 1st Neuro Surgon told me that the srynix DOES NOT CAUSE ANY PAIN left us stumped. But me being the fighter that I am I knew different and knew that something HAD to be causing me pain and discomfort in my neck shoulders, thoracic back, arms, and hands, ( I knew I wasn't crazy even though they make you feel that way most of the time than not) so I made the choice to never go back to him for the reason being that I know myself and my body more that anyone else on this earth even the Dr.'s so I went on to continue my journey of finding relief for some answers. The most frustrating part is that you go to your primary care Dr. then they send you to a PM (pain management) DR. who knows NOTHING about srynix's nor does the Neuro Surgeons. so the care we get is none outside of pain killers then they want to treat you like all you want is pain pills, I want to know what are my do's and dont's and all they can tell me is "don't put your hands above your head" really? The 1st question I ask them do you know anything about a synix and they tell me that they are familiar with them, well knowing and being familiar are definitely 2 different things, and it show with the care you get. I have been going in this painful journey for a while now as you can see. I have been to 4 different Neuro Surgons for them all to tell me that surgery is not an option, non operable, I'd either come out of surgery with my legs not knowing which direction to go in or I wouldn't have the use of my arms or legs, go figure, so surgery is not an option for me and with that being said my progresses, symptoms, pain, have only gotten worse. I have headaches all the time, Im in A LOT OF PAIN to say the least, Stiff neck, stiff back, (ex. just pick up a towel to fold is painful) it is affecting my nerves, (my hands and body shake) my legs are getting weak, (when I stand they shake) It seems to me that the Neuro Surgeons and Pain Management Dr.s need to do more research and educate their selves if there going have treat people like us with srynix. One thing I have done is educated myself during this journey (I know more that the Dr's Ive seen but they still don't listen to me) so I got in contact with the mayo clinic that specializes in syringomyelia, and just off my initial conversation with the office person that answers the phone she knew exactly what i was talking about I was blown away (for 14yrs Ive talked to Drs and they just look at me with a blank look on their face and its like I'm talking to myself and I feel worse leaving than when I got there) but not talking to the lady at the mayo clinic Dr. Green 305-243-3262 which whom I have an appointment with in April. I actually had a conversation with someone that could talk back and truly understood what I was saying. It is a physically, and emotionally draining process on all parties involved in our life. Also during this process I have been to psychiatrist, counselors, chiropractors, physical therapy, injections in my back and the only that has given me a little bit of relief is physical and its not much at all. For us to be referred to a PM, or NS it should be one that knows how to treat someone with a syringomyelia, it's not fair to us that suffer through this disease that takes our life away from US!!!! SOMEONE AT A HIGHER STANDARDS OF THE BOARD OF PHYSICIANS NEEDS TO TAKE LOOK AT OUR CARE AND CONCERNS AND DO SOMETHING ABOUT THIS, BECAUSE WE THE PATIENT'S ARE FALLING THROUGH THE CRACKS!!!!! AND THE DR'S ARE STILL GETTING PAID AND GOING HOME TO THEIR REGULAR, NORMAL LIFE WITH NOT A CARE IN THE WORLD.

Anonymous in Pickens said...

I'll be praying for you. I truly hate that you've been going through this for 10yrs. I am glad you have found someone now that is educated and that can help you. Hopefully you will get some relief soon from all the pain that you're in.

Anonymous said...

I have had a c4 syrinx for 20 years and take lopressor and had to get a Medtronic interstim to help my bladder to work after bad MD put in sling I have only little headache pain but am getting attacks of painful pins and needles feeling but not when I'm working out just at random times any suggestions?

Paula said...

My daughter has just been diagnosed today with two syrinx (upper and lower back....i dont recall the positions as I am numb right now) She has a lot of pain, daily. The back specialist says her pain is not related to the syrinx. After reading here I disagree. She is only 12. We are being sent an appointment to see a neurosurgeon at Alder Hey Liverpool. Does anyone have advice? or can explain more?

Anonymous in Pickens said...

Paula, I'm praying for your little girl. The only advice I can give you, is that most doctors don't even know anything about it.

Anonymous in Pickens said...
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Anonymous in Pickens said...
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Anonymous said...

I don't even know how out of date this reply is but, it was found in 2005 I have a 2.1 cm(sagittal)X 4mm(transverse) X 2mm (ant/post) from C6-C&, C7-T1, it's 2015, it's been the same size for about 10 years and guess what, exactly like you guys pain and the effects have not slowed and I've heard the same. I havn't been able to take most of the things they prescribe so it's had to be holistic and most times grinding my teeth and waiting for the pulsing in the neck and head to stop. I think I actually found the one dr. on the planet(or at least NY) who had actually said that the size of it and relation to pain didn't matter.That was in 2005, and ever since then ALL the other dr.s say the small ones shouldn't be causing this much pain for you. Bull! mind you I have a slew of other bad nerve and spine and joint issues, however that's just added to it. I think one thing that gets me is that most dr.s want to take something out when it's small, but due to where it lies they have to let it be big. I understand the risks with surgery,especially that one. so I'm wondering if they're just trying to downplay what it does to people(everything I read states how damaging it is to the whole body, heh yeah no that could't cause that much pain..Bull again...plus ranting)) so they can avoid a malpractice suit. I'm at a loss for words when I see blogs like this mainly because when it's this many people that are experiencing the same symptoms, the same pain and the same fun of wondering which limb is gonna be dead weight today, and if it was one person out the masses it could be a fluke, when there's a damned blog about it with people from everywhere, then it's not a fluke it's a problem that the AMA needs to take a real hard look at how they gauge this.

Anonymous said...

As I sat here, I literally have tears welling up. So many stories mirroring my own! My story is:

Two years ago, I began having severe pain in my neck to the point where I felt as if somone would just cut my throat and neck out and attached my head to my shoulders, I could live life again! I am currently being treated for chronic pain due to a lumbar injury & have been since 2004. I decided to bring up my new symptoms to my doctor as the pain was not even being touched by narcotic pain meds. My doctor decided to do a MRI and told me I had degenerative discs in my neck. Flash forward a year: the pain is 50% worse, constant pressure in the base of my skull and neck, chronic headaches, numbness in the left side of my face and fingers, intense itching in a 1 inch patch next to my nose, a never ending pulsing in my head and double vision. I told my doctor something needed to be done because the way I'm living right now is not living. I am a mother, a wife, an Officer and 34 years old. I have always been active and right now, I feel like I'm in a constant fight with my body. It is exhausting. I make it through my work day and literally do not want to move at the end of the day.

I begged and got a second MRI and just received my results. A 1.8 cm x 5 mm x 4 mm syrinx at my c7-t2 & Thornwalt cyst. I have to wait until August 31st to go back to have the results read by my doctor but after researching a little, so much is finally making sense! But also, I now have so many questions!!! It appears that on my first MRI, the syrinx measured 10 mm x 3 mm x 4 mm however, I was never even told it existed!!! 16 months in constant, unrelenting pain and pressure yet I was never told.

Julie, Alexis and Chris said...

My daughter saw dr Ellenbogen also. She saw him a few times. Her syrinx is C3-T10. It was at most 12mm width. And she has Chiari as well. Dr Ling in Spokane did her decompression.
Dr Ellenbogen wouldn't see her anymore. He said we should go back to Spokane. We are in Pullman. I would drive anywhere for the best help but it was like he didn't know what to do to treat her anymore.

Unknown said...

Epidural injections ARE NOT a solution for Syringomyelia! They can and will make symptoms worse! Heck they can CAUSE Syringomyelia

Unknown said...

Epidural injections ARE NOT a solution for Syringomyelia! They can and will make symptoms worse! Heck they can CAUSE Syringomyelia

Anonymous said...

I know my symptoms got worse after I had 2 epidural injections done.....

Unknown said...

Hey tammy go to dr barth green in miami

Irish Syringomyelia person said...

Diagnosed with a syrinx in early 2014. No history of injury or no chiari found on MRI. I suffer from constant mid and lower back pain that radiates down both legs. I try to keep fit by walking but even that can be difficult at times. No one seems to be able to help. One feels very alone with this illness!!

Krista Miller said...

In 2007 i was stopped at a red light and watched as a van blow through the red light coming at me head on, unfortunately she hit the back end of a car in the intersection and spun in a circle slamming into the front driver corner of my car. As i watched all of this unfold in slow motion, i braced the steering wheel and pushed myself into the back of my seat as to not fly forward and hit my head. Immediately after impact my head felt very tingle and i could smell smoke. For 8 years I have had regular visits to my doctor with complaints of back and neck pain, headaches and lots of other stuff and was diagnosed with Fibromyalgia. I was sent for just a neck MRI and that did how congenital fusion of C5-6. ONLY 2 months ago I marched in to see my new doctor as the meds do nothing for me and requested a full MRI and another Rhumatology appointment. I now have an urgent referral to a neurologist for syringomyelia and a herniated disk. I am so angry that i was not being heard for the past 8 years of suffering.

Unknown said...

This post was AMAZING! I absolutely love and agree with everything you said. there is no knowledge amongst our doctors about this and I am fed up. I'm tired of doctors telling me just because I have a skinny yet long syrinx starting at about c5 going down maybe to T1 or T2 that it doesn't cause my pain. Why else would I have constant neck n back pain or shooting pain down my arms and legs not to mention the fatigue is INSANE!! I can never get out of bed I need to be laying down as much as possible. Its hard to sit up. Muscle spasms randomly, I can feel the pain more when I breathe in. And I always feel tingles all down my back and for what reason?!! The SYRINX! how sad is it that the PATIENT knows more than the freaking DOCTOR!!!!!

Unknown said...

After low back pain that began in 2005, I only thought I knew what pain can keep one from doing in middle age. Now a decade later, syringomylia is way beyond the debilitating results of herniated disc pain and degenerative disc disease. After dozens of spinal injections,R.F. Nerve-burning of 18 individual locations in lower back. S-I complete, and the facets of the L-1 to L-5. I would experience a deep pain in the base of my neck along the top of my shoulders. This pain would only happen 3 to 4 times a year now diagnosed with two separate MRIs 1 in 2013 the other in 2014 the diagnosis of Syringomyelia now has both of my hands are now numb it hurts greatly to wash them in hot water my left arm has bicep pain deep in the bicep tricep area and at times I cannot lift my left arm higher than my shoulder. When the neck pain occurs now it is two to three times per month and is excruciating the deep requiring significant medications which I am beyond sick of. It is extremely frustrating there is no body of evidence or clinical trial or a path to a neurosurgeon qualifying to reduce the size of a few small syrinx found. My symptoms have rapidly increased in just the past 30 to 60 days 211 I never imagined. I strongly encourage those of us afflicted to communicate together creating an organization of patients who can share what does or doesn't work and/or physicians or universities such as Duke in Chapel Hill, the Mayo Clinic, excetera. I do not believe that there are only a fraction of a percent of the population on this globe suffering from this disease. Walking safely driving a car safely dropping things frequently along with disorders of the bladder and bowels can become maddening. I welcome any feedback or suggestions from anyone who has genuine experiences to share. My email address is jcwhite2008@gmail.com



Unknown said...

Syrinx: a LESION within the spinal cord that is filled with cerebral spinal fluid thus resulting in a cyst formation

MS: Lesions on the outer portion of the spinal cord and/or brain

If you put on a very small shirt inside out (Syringomyelia)it is going to feel tight and uncomfortable. When you put it on outside in (MS) it is STILL going to feel tight and uncomfortable! No difference, JUST like SM and MS symptoms

Anonymous said...

I'm so sorry for everyone going through this. I was given my diagnosis Feb 2016 I have syrinx at C6 & C7 3mm extends 1.3cm. I was in a bad head on collision in 2002 had been complaining shortly after of neck pain (burning sensation)and not being able to be on the computer more than 20 minutes at a time before the pain would make me log off and couldn't raise my arms without pain. Sometimes I would say it feels like someone beat my arms with a baseball bat. Needless to say the Dr's would not take me seriously...As the years have progressed the pain is now extreme in both arms it's hard to raise a coffee cup in the morning and my neck is always tender and burns it's hard to sit up without neck support I find myself holding the back of my neck just for support. I have dizziness daily now and don't trust my balance anymore. Sleeping is difficult I can't find a comfortable sleep position, because my shoulders hurt so bad without having pillows under both arms to hold them up. I feel sick to my stomach often and so much more... The Neurologist informed me that my pain isn't coming from my syrinx. All I can say is I know it is!!!

Anonymous in Pickens said...

That doctor is lying... I have one behind C6 3mmx3mmx7mm long. I have involuntary movements in my left leg and they have recently started in my left alarm constant pressure in my nick with headaches that never go away. 90% of my days are spent in bed. The reason my other daughter say this is because they don't know Harley nothing about this disease I receive mine from a work related injury in 2012 .

Unknown said...

So from everyone's comments, no one has found a physician that has been able to help??

Tiny said...

I am 39 yrs. Old spent 8 years in the US Army and 13 yrs. On the Railroad. Last year the pain and numbness in my back, butt, legs and feet became so bad I had to be taken out of service, I went to the doc. And I had 3 MRI taken over a period of 6 months. Thorax syrinx t-7 through t-12 8mm in diameter. No one will touch it around here. Also have spondylothesis L-5 S-1, L5 bulging disc and degenerative disc disease. Almost bed ridden most days, I just don't know what to do anymore.

Tiny said...

I am 39 yrs. Old spent 8 years in the US Army and 13 yrs. On the Railroad. Last year the pain and numbness in my back, butt, legs and feet became so bad I had to be taken out of service, I went to the doc. And I had 3 MRI taken over a period of 6 months. Thorax syrinx t-7 through t-12 8mm in diameter. No one will touch it around here. Also have spondylothesis L-5 S-1, L5 bulging disc and degenerative disc disease. Almost bed ridden most days, I just don't know what to do anymore.

Anonymous in Pickens said...
This comment has been removed by a blog administrator.
Anonymous said...

How are things now? I am facing daily pain levels I don't think I can handle anymore

Anonymous said...

I fell of the monkey bars in third grade and have suffered for 10 years begging my doctors for a simple MRI. After my last visit I finally was sent to get an MRI done. They found a syrinx that is 4mm×4mm×45mm that goes from T12 to L2. They didn't do a complete spinal MRI only cervical and thoracic so they can't see how long or wide it really is. I am now 19 years old and I have trouble walking,severe chronic back pain, knees that are stiff, sometimes my hip socket feel like they have no cartilage in them, I can't bend to put on my socks most of the time, I have to constantly change positions while I'm sitting. I don't exercise because I hurt way too much after. I can take a muscle relaxer or a hydrocodone and it's like I never even took the pill. Nothing phases this pain. For those of you out there who are dealing with these symptoms, my message is don't wait. Insist on an MRI. The doctor is not the one suffering. This is a life long condition that only grows worse. You may or may not have symptoms. If you do don't let it go.

Unknown said...

Not for syringomyelia

Unknown said...

Get after V.A hospitals?

Unknown said...

Get after V.A hospitals?

Anonymous said...

To anonymous registered nurse. Im a nurse also. Long story short, my syrinx is 2 x 2 x 4mm@C1, C2. Ive an 8mm chiari. My neurosurgeon has advised "avoiding Valsalva maneuvers"....you try that nursing aged, immobile patients!!!...At any rate...as I was not given parameters...Im awaiting a 2nd consult to clarify same, end this sept. I will post response which may be of assistance to you and others.

Anonymous said...

Incredible. I have been to a neurologist some 4 hours ago. I have been having daily headaches and neck pain every f....day for the last two years! Finally I went to a private clinic ( public GP would constantly send me to do some streching) and asked for Mri. It turned out that I had a syringomelia,but now my neurologist things although MRI shows a small cyst he does not think I have it. I might be having stiff shoulders! What? wtf! I am going to see another neurologist! On the top of everything, my parents think that I am exaggeratint things! Unfortunately the pain is so invisible. Some days I would give anything to feel myself a normal, headache-free human being!

Theresa said...

Hi JC, I'm 61 & not old but the spine pain I know all too well! Yes, break down and cry, just sobbing from the additional new pain in my sacrum being most recent. Living my life lying on a bed for lack of any energy and have the thoughts of the chores and fix its I am going to do as soon as ........ Then you get up weak legged, unable to step over dog, realizing the fisherman sandalls are hurting your spine as you lift your feet. God could I share my story with you if you ever want to discuss spine and pain issues. The syrinx diagnosis came from me typing in everything that was going on from choking, aspiration, tracheal collapse, cough over a year and a half, afraid to take a pill for fear of choking. I was an active full time, stay at home single Mom. We went hiking to different areas for artifacts or rocks, martial arts, jungle gym in yard, active and spotless house but comfy, cooked, good meals in it with both feet. Me and my boys!! After 8th. Grade time for my boys I went to a community college and over the next 2 years became a Paramedic and worked in the jungle as a ghetto medic. Carried people on stretchers down steps, up steps, delivered around 13 babies. The ambulance was shaken and moving. It eventually saw bones breaking and breaking down. I'll tell you more another time. My arms are trembling from the weakness and been awake all night. I had almost quit typing complexly from the deep (new) shoulder tendon pain and the now chronic feeling the my shoulders, upper back feeling drawn and pull forward like a shawl pulling me type. Noticed left arm ached if I raised it side ways. I've had spinal fusion for severe spinal fusion in lower lumber but it has broken down just from me taking care of manual labor jobs around my house and yard and large vintage garage. I have always gotten copies of every Xray and MRI also CT scans. They hate when you have some medical education and know the law that we are entitled to a copy for our selves. Found a few law books and law dictionaries as I lie here watching my life turn to dust.;)
Now I feel that she should legalize all drugs. I'm no doper but it would put the dealers out of business. By legal means I would like a stimulant/sedative Combe for energy and a calm feeling when life was normal, whatever ever pain Rx I want that won't make me nauseated or leave a bad taste. I have braces for nearly every joint and am now wearing a hyperextension, non-articulating metal and leather that straightens me up enough to breath. Not pretty but does help support what I was having trouble holding.up. Embarrassed to stand up from sitting at doc's office as I sometimes stagger until I can adjust to standing and walking. I'm grateful for pain Rx that I do get but need more of something else to use when this screaming pain hits. It's like my spinal cord is raw meat with nerves dangling and so raw and sore I swear it's going to cause a heart attack. Well the slight lull of pain easement and calm come from pain rx and brace combo. Even made breathing easier. I'm at astrotitph101@gmail.com if you or anyone would like to share. Boy, hands weak and shaky and tucking my elbows to ease shoulder burn but I am shaky. I hope everyone finds a slice of ease somewhere in your day.

Unknown said...

Hi nurses...I'm a nurse too. I was dx last year after 4 years of back pain, moderate extremity weakness, many other neuro symptoms. Believe it or not I was initially dx with Parkinsons and took meds 3x daily for a year before getting 2nd opinion. Then a workup for MS that was inconclusive. Finally got insurancd to approve an MRI which showed 2cm wide syrinx C 6-7 all the way down to L1. Worst pain is thoracic, like a vice cramped around my mud section and sudden movement is like a knife in my back...imaging also showed 15 bulging discs with 7 impingements of the entire spine. Thoracic is "flattening" the cord. Nobody will treat me. Neuro says the syrinx is not causing my symptoms! And apparen't nobody will repair thoracic impingements..."it is too extensive and a very long painful procedure...there is no hope to improve function or pain," so I can't even find a surgeon to do the repair. Nobody seems to be educated...I had never heard of it either. Anyway, good luck. Thanks for listening.

Unknown said...

Hi nurses...I'm a nurse too. I was dx last year after 4 years of back pain, moderate extremity weakness, many other neuro symptoms. Believe it or not I was initially dx with Parkinsons and took meds 3x daily for a year before getting 2nd opinion. Then a workup for MS that was inconclusive. Finally got insurancd to approve an MRI which showed 2cm wide syrinx C 6-7 all the way down to L1. Worst pain is thoracic, like a vice cramped around my mud section and sudden movement is like a knife in my back...imaging also showed 15 bulging discs with 7 impingements of the entire spine. Thoracic is "flattening" the cord. Nobody will treat me. Neuro says the syrinx is not causing my symptoms! And apparen't nobody will repair thoracic impingements..."it is too extensive and a very long painful procedure...there is no hope to improve function or pain," so I can't even find a surgeon to do the repair. Nobody seems to be educated...I had never heard of it either. Anyway, good luck. Thanks for listening.

Chris said...

Hey guys. I'm a 22 year old male and was diagnosed with idiopathic syringomyelia last year after dealing with on and off tingling pain in my hands and feet and chest area. I don't have chiari. it's very frustrating to live with and I understand what you guys are going through :/. I used to play soccer and lift all the time and now it saddens me because I feel like I'm not the same person I was anymore due to the limit of what I can do exercise wise. I was told to stop sports and lifting. My neuro is confused and says my leg symptoms should not be from the syrinx and it always frightens me when he says this because it just makes me think something else is wrong with me. it's such an annoying life, dealing with pain on and off every day now and doctors seem to not be able to make sense of this disease. I'm premed now and this experience has really just made me worried about a career in medicine but I'm still pushing through as of now. I was diagnosed in 2015. I'm hoping there is some kind of procedure that can help down the line because My symptoms are slowly getting worse. I've heard that a CINE MRI can be done to track the flow of Cerebral Spinal fluid and I'm currently in talks with my doctor about getting one. I've also been looking into chiari zero however there seems to be little info on these conditions and it's really annoying. I wish more research could be done.

Unknown said...

I love in Oregon...but I am so frustrated that if you have a Dr that understands syrinx and has helped you...I will beg borrow and steal to get to him/her. I am at my breaking point and at this point I would rather end my life than deal with stupid neurosurgeons and this pain. Please help. Michelleleemoseley@gmail

Unknown said...

Well they removed mine in 2003 and since then I'm in the bed it has got so bad I can't even straighten my legs out and then im running fever everyday honestly I want to die because I can do nothing

Anonymous said...

Gabaneuron 300mg (Gabapentin + Me cobalamin) is the medicine for Syrinx. It is not a cure, but gives relief for 12 hours. You may get good sleep. This medicine can also be available in 100mg.

Unknown said...

Hi i have undergone C1-C3 ATA, in 2013 dec, noe perfecrly Fine, Recently was experiencing pain Weakness in hands , Stiff back and neck. Syrinx is located at c5 c6, can it be dangerous down the line .

Anonymous said...

My son tore a cervical ligament at age 4. He had neck pain for over 2 yrs.
He has a choking or feeling an ax is coming through his throat. He is now 7. At 6 he began having increased sensitivity to left shoulder area and constant itching there. He has pain behind knees and headaches and "wobbly legs" he describes.

Before the injury he never knew pain. He never knew the word headache.
He suffers daily and hydromyelia showed on an MRI.
Noone seems to care as far as doctors so I went to 6 neurosurgeons before one in New York at the Chiari Institute listened. I feel your struggle. Medical community can suck. And I am a nurse!

Anonymous said...

I have a child that fell and hit his head tearing a ligament in his spine. It has taken 3 yrs for an answer because doctors blew off symptoms.
Dr Rekate ordered a flexion extension MRI and the hospital did a flow study. My son was diagnosed with craniovertebral instability. This caused cranial settling tonsilar ectopia and hydromyelia.
The Chiari institute is where we went with our questions.
It only costed 240$ to review MRIs and then the doctor ordered a c collar and a flexion extension MRI.
A week before the result from the Dr. We saw a ortho doctor Rathjen at scottish rite dallas who said "ignore symptoms for 2 yrs. And it would be fine." he had no clue.
Call Dr Rekate at the Chiari institute!

Anonymous said...

Chiari can be result of neck injury like my child.
He was totally fine.
Then tore a cervical ligament and then craniovertebral joint was weakened and so cranial settling occurred. Means hos cerebellum sunk into his spinal column. This Condition was a result of the injury.

Anonymous said...

Hi.
I sympathize. My son suffered a cervical injury at 4.
He has neck pain headaches and now sensativity to his shoulders. Pain if he holds head back.
We saw 6 neurosurgeons before I got an evaluation from the Chiari institute with Dr Rekate.
He listened and ordered a flexion extension MRI.
Hospital radiology read as normal but the good doctor did measurements specific for craniovertebral instability. It turned out my son actually needs a surgery despite the other doctors blowing off symptoms and never ordering the correct test!
I felt crazy bc of how medical community treated my son. I felt anger too. But we found the Chiari institute was affordable and the doctor Actually cared. Please go to them.
Also Dr Brockmeyer in salt lake is highly recommended by Dr Rekate.

Kelly -StL, Mo said...

Absolutely not. Remember the spine is a bone with joints. The more force, the more long term damage. It may get you through a day or even a few weeks but eventually there will be nothing left for them to work on

Anonymous said...

I have two syrinxes. One is in my cervical spine and the other is in my thoracic spine. As of my last MRI 3 years ago, both are 3mm. My neurologist said he didn't know how to treat me (he said he's never had a patient with a syrinx before) so he referred me to Stanford Pain Management. Not even Stanford could treat me. This is a very lonely disease. I, too, am on 3 different medications, live with daily headaches, weak arms, hands, legs and experience so much pain at times all I can do is cry.

Anonymous said...

My son was found to have a Syrinx at the very base of his neck/start of his shoulders when he was 7 years old, during an MRI which was being done to investigate the pain he was in which seemed more than he should have for his Hip Condition called Perthes. We were told that nothing needed doing and it wasn't the cause of his pain, but if he ever had any strange symptoms like pins and needles, numbness etc to get him straight to hospital. Over the last few years he has still been plagued with back pain, but we are still told, no connection. However, now he's nearly 15 he's developing regular pressure headaches usually on top of his head, is this likely to be connected to the Syrinx? Doctor told me it may be Migraine, but I have migraines and it doesn't seem like that at all.

hlittleangl03 said...

Who are doctors, who have limited education about syringomyelia, to say that it can't cause such symptoms? It's frustrating because then they just try to pawn you off on another specialist who thinks you're nuts and making it all up. My syrinx is 2mm wide by 22mm long. That's considered "small" by my neuro, and the immediate plan of action is an MRI with contrast every 6 months. A lot more symptoms can pop up in 6 months time, or old ones can get worse! I deal with left sided weakness, headaches, weak, wobbly legs (more so on the left), and my balance sucks sometimes, even if I'm just sitting! It's hard to live with, especially with a toddler at home who doesn't understand why mommy can't always pick him up and play like we used to, or who has to suddenly change position to stop that moving feeling while sitting still.
I don't know what's worse-the knowledge of the eventual possible outcome of becoming paralyzed, the hope that MAYBE it will resolve in its own, or the possibility of paralysis and neuro disfunction in other areas if I were to get the surgery.
It feels like a no-win situation aND is scary as hell on a daily basis.

john smith said...

but i fax in my doctor excuse & I'm still under my doctor's care...Can they do that... Sarah Wayne

Anonymous said...

Hey there im apart of the us army and a year ago my pain management doc discovered a small syrinx in my l3 -l5 and sent me to a neurosergon to get looked at. That doc declined my lowerback and bilateral sciatic pains could have been related to the syrinx and i am too tired of docs saying that i know its just not in my head and i know the pain doesnt really stop. Now i have to get booted out of the military for pretty much not being able to meet physical standards for a reason "unknown" i dont understand our disease or why there isnt a doc that really knows anything about it

hlittleangl03 said...

My vision changed as well. My syrinx is at c6 and 7, and is 2mm by 22mm. The only doctor who said that the dizziness I get may be caused by my syrinx is my new PCP.
Yesterday we went out to dinner and I did the first leg if the drive, 45 minutes away, and my back and left arm kept going numb. My legs were wobbly when I got out of the car. We sat in the restaurant and I got hot, my face got super tingly, and I thought I was going to pass out. Left my family in the restaurant, went out to the car for some air. Legs were spastic on the way home. When we got home, I went and laid down, legs kept going between a buzzing feeling and numb. The fatigue is almost constant these days, and I have tinnitus on top of it all.
I try to get up and move a little every day,because I have read the less you move, the worse symptoms can get. I was diagnosed in Feb of this year, and will be going back every 6 months the for MRIs to check and see if the syrinx progresses.
I call BS on anyone who says this thing doesn't cause symptoms, at a "small" size.

J. Whitman said...

Does anyone in the comments have information on Spondylosis? I love reading about back conditions and learning more about what causes them. Another one that I don’t see much written on is lumbar radiculopathy, so if anyone knows where to direct me for treatments related to Cervical Fusion or a herniated disc, let me know!

Anonymous said...

I'm a chiropractic physician who just ran into my first syrinx....long story......i think it came from upper cervical instability from the first wreck..and then it happened on second wreck..ordered flexion/extension xrays ,,posituve for instability at more than one level C2/C3 3MM retro..Its physics, more momentum with laxity causes more whip and bam you have it like a bubble/vacume.....got in 3rd wreck in neuro psrking lot..which I warned about...neuro ,hospital then out,,,I need the Miami doctors name...at least he is on steroids now...been fighting with it...drdurhamdc@gmail.com

Anonymous said...

Check out this website, deflame.com Consult with pharmacist before taking any supplements because of drug interactions. Also, proenze does not work well with a patient kith kiddy issues/lupus, it sounds like there is inflamtion occuring in the cord as well as possible expantion injury with physical activity. Defaming the diet should help since that would decrease inflamation,3 decreasing proinflamatofy intermediates. This is my neurology/nutrition professor's website from chiropractic college, I started out,trying to become a neurosurgeon :) GOD Bless. JESUS LOVES YOU.

Anonymous said...

Sorry for the typos, new phone. The size of the syrinx is going to very with changes in barometric pressure, it's going to expand and contract like a balloon. The measurements on the MRI can very based on the barometric pressure on the day and location of the MRI. You can check barometric pressure on your smart phone. Try to live in an area that has higher steady barometric pressure. Consider a hyperbaric chamber,hyperbARIC room house, environment etc,

Anonymous said...

You guys need to go live a nuclear sub or have your own sub, then have high barometric pressure environment, my best answer.

Anonymous said...

Did you take him to thechiari neurosurgical center in BLake Success NY? Marie Ravengirl4444@yahoo.com

Anonymous said...

Craig in Syracuse: I have lived for a decade now with a diagnosed Syrinx. Three herniation's in the spine: lumbar, upper back and Neck. I had all of the weird symptoms, and at one point they thought I had MS because of tingling and numbness on just one side. The Fatigue and dizziness was the worst. I have dealt with all this by changing my diet radically, going to a chiropractor, Vitamin supplements and Young living essential oils. Believe it or not I believe the oils have helped me the most, at the beginning. Absolutely NO Nsaid pain relievers. I use a natural pain reliever called Arnica Montana that I get at the health food store. Drinking a great deal of water has also helped. I do not believe I will ever be cured of this. I do believe there is a connection between your bowels and your spinal cord that doctors refuse to recognize. What part that connection plays in a syrinx formation and flare ups I would like to know. I do know that Trauma played a roll in the formation of mine. Recently I hit my head on an overhead door and now a lot of the old symptoms are back. Oh well. I wish you all the best in your journeys with this monster. It makes me very sad to hear that many children are dealing with this. I was 44 when it all fell down. Don't give up, try to create an attitude of gratefulness toward the universe of cells that make up your body, this is very important. Your body is doing the best it can under the circumstances.

Sonia rodrguez said...

Omg am so glad I found this blog..i also have syrinx and this new pain management wants to put me on epidural injections on my neck ..i don't feel comfortable with this doctor neither the neurologist I have headache and chronic muscle pain around my neck and shoulders and they keep telling me is not because of the syrinx..if is not the syrinx then what..only you know your own body ..they look at me like am crazy ..i been doing my own research I decided am not gonna do the epidural injections am going for a second opinion .thanks

Malcolm said...

There seems to be a lot of comments posted here on experiences with synx. I have a C8 syrinx and I keep thinking I am imagining things. I have been to three neurologists and three cardiologists. I keep having irregular heart beats with no heart issue, was told it could be the syrinx. I also have pain down the sides of my legs, the top of my right foot has gone numb permanently, I have hand co ordination problems where the words I type are not the same as what I am thinking and have to continuously redo my sentences with a myriad of mistakes (thank goodness for spell check). My hand, eye coordination in terrible. I can't stand for more than 20 min without extreme leg pain and I lose balance often. If I sit I get leg and back pain in the center of my back. I have bladder leakage as well. I am battling to work as I cannot focus with the amount of pain I have daily. The neurologist s say that some of the symptoms could be related to the syrinx, yet give me no action or solutions on what needs to be done to manage it. They will not operate but rather wait and see and in the interim the pain is there and I have been told to take panadol....really? It has been going on for a year now and I am getting to the point of being over it!

Unknown said...
This comment has been removed by the author.
Unknown said...

Hey!! You have a very similar story to mine which makes me feel a little less lonely! I was injured at work and had to push the work insurance doctors for an MRI because I could almost feel something on my spine that was causing a lot of pain. I was having (and still having) headaches that turn into migraines, numbness in my left arm down to my fingertips, balance issues (swaying when going from standing to sitting) which then causes my vision to blur for a bit, and amongst other things. I went from having a completely active lifestyle to not being able to clean my apartment without my back flaring up and getting a migraine. I have a Thoracic Syrinx 2-3mm and the doctor I'm dealing with no doesn't believe me and put me on modified duty which I work with special needs children daily- there's no modified duty when you need to pick up a 5th grader off of the floor. If you found any doctors or info please reach out to me! I'm not in Canada, I'm in California but any positive news about this would be amazing! Bridgett.betka@gmail.com

Unknown said...

I have been struggling with the ongoing pain and other related symptoms from my traumatic srynix at C7 which was over looked until I became proactive in my own research. I was told that a small srynix could not be the cause of my pain and other symptoms I was reporting. This was in 2008 and by 2010 my left side face down to my leg went completely numb. A trip to the ER thinking I was having a stroke led me through a nights stay in the hospital with a final conclusion that my symptoms were directly related to the C7 srynix. I found Dr. John Oro in Aurora Colorado who was able to properly dianose that I had a traumatic srynix caused by a screw during a revision fusion from C5-C7.Dr. Oro refered me to Dr.Scott Falci at Craig Hospital in Denver Colorado. After extensive testing Dr.Falci and his assistant Charolot took me into an 8 hour surgery. During this surgery Dr.Falci performed a spinal cord untethering and placed a patch using pig heart lining over the hole(srynix)and placed tent over the patch. Dr. Falci is one of three surgeons in this world that can successfully perform this type of surgery. As a direct result I am not in a wheel chair and Dr.Falci confirmed that had he not have done the surgery I would have been in a wheel chair for the rest if my life. This was done in 2011. Unfortunately he was unable to perform the last step which was a fusion at C7-T1 he tried twice both times were aborted due to high risk of complete parallsis.There is so much more to the story but the bottom line is that a small 4<8cm srynix can and does cause severe pain in the shoulders,arms,head and fingers. Along with horrible itching difficulty walking strange types of sensations in my head. Not the same as normal dizziness.I am tried all the time. I am very inactive due to the related pain. The only posistion is standing up or laying down. Sitting in a chair or car is very painful.In addition I have lumbar issues. I can not stress enough just how important it is for anyone with a spinal cord srynix to seek out the proper doctors. Along my journey what I learned is that when a nerosurgeon is not educated by exspreiance in srynixes they will try and pass it off as nothing. Rather than be honest and say they dont know. I have medical documentation of one of the many nerosurgeons I saw chance his opinion after the fact to cover his butt.Our bodies are the telling us what is wrong by the symptoms the problems produce. It is not all in your heads. Its real.I am still in a mess which is related. The surgeon that caused the hole in my spinal cord(srynix)also used (BMP)bone morphigenic protien during the revision surgery which got into my spinal fluid and caused a tumor located at lumbar L4 . I had the tumor removed in 2015 and within a couple of months it came back even bigger. I am on chemotherapy and just found out I have another tumor at L5. My oncology surgeon said my tumor type is related to the use if BMP but wont write that in a damning letter for me. Just as I had to prove on my own with research in order to find the right doctors I have been waiting to find the researcher who can support what I already know with their clinical research and documentation. It said but true doctors are afraid to be honest.I appologize for being all over the place while writing this information down but it is very upsetting for me. Trying to cram 13years worth of medical history in a condensed form.my sago began Feb. 17,2005 and is still on going.

Unknown said...

My email is cheri7777@msn.com this is for anyone like me who has a spinal cord srynix. I just left you all with some of my history above. I can share what I have learned and been through and I am looking to learn more from others.

Unknown said...

Lydia,
If there are side effects you do not like about the morphines you are taking then you may want to have that open dialog with your doctor and based on what you report as unwanted side effects he/she can give you recommendations. I recently tried the morphies like you are taking to try and save money on my HSA. They were not as effective. And I am bummed they didnt work for me because thats thousands of dollars savings for me. They made me so sleepy and dizzy.... I was only awake maybe 3 hours in a 24 hour cycle. As it is my pain is exhausting on its own but not sleeping 21 hours out of a day...I have found that oxycontin er and roxycodone for break through and I take lryica along with my ER dose and my breakthrough dose which has stopped some of the electrical shards of pains. However, sudden onset and exaserbated pains brought on by differnt ranges of motions.

Unknown said...

If my right arm is too high or extended out I get sudden onset nerve pain. If I tilt my head down in certain levels I get zapped by a sudden shard if pain or burning sensations..The pain medications for the guarding musscles issues. I have labled some of my pain trette syndrom pain because it causes sudden onset of profanity usage....I am not a profanity user at all...butt I have been in a grocery store and reached to a upper level shelf to grab a box of ceral when zap!!! The F_word came flying out along with other words that Gram dosent use. It can be compared to sticking my finger in a light socket and feeling that burning sensation very quickly.I actually stuck a little pair of nail scissiors in a light socket when I was 4 years old. Part 2

Unknown said...

If at the end of your medical journey your medical doctor says you cant be surgically fixed any further and you are at MMI then you and your attorney better have your ducks in a row. My over you need to be completely educated in all things settlement. My attorney in Denver is part of the good old boys club. That means he is going to ve working with the same judges and opposing councles for years to come. We the clients come and go...they dont get paid until we settle. They know up front what your case is worth. The laws surrounding workmans comp are old and on the side of the buisness owners. Part 4

Unknown said...

The cash lump sum, life time medical sum in a health savings account, and the! enuity...my pays only $1200 per month for 18 years. I am still not recieving disability like the judge and both side of lawyers said. I settled 4 years ago. I tried to work and could not. Trying to live on $1200 by myself is below poverty level the judge told me that I had better settle because all they have to prove in court is that I can find a job that pays 38cents an hour. Then he said I not telking you that is going happen but it could happen along all the parties chiming in, in agreement and I am still in pain and in tears and I didnt feel like I had a choice..but I now know they lied and bamboozled me.Including my own attorney...So my best advice is to be strong, take control of your care with your team of care providers. Ask question every where you go. Take notes. Always get your own copies of MRIs CTs xrays etc on CD and your written reports. If anything doesnt look right challange it. If your doctors notes say something in error ask to have it amended right away. They will...the workmans comp is gathering any and all information to use agaisnt you. Their jobs is to say no....But your attorneys job is to know why they have to say yes..... When I was pushed to settle my case after five surgeries. If I knew back then what I know now about settlements I would not have settled yet. Craig hospital in Denver Colorado has two floors. Top floor is brain injury and the next floor is for spinal cord injury. Thats it and you have to meet their criteria.
if you have any questions please by all means ask.I hope I cut and pasted this correctly. You can print so many words at a time.
Kindest regards,
Cheri
cheri7777@msn.com
Part5

Unknown said...

Hey guys boy am I so happy to find this blog. I just found out I went in for an MRI on my shoulder blade to see what was causing the numbness and tingling I will admit I don’t have pain I’m not in pain it turns out that I bruised my scapula I guess scar tissue overtime from weights but when they found out it was edema what was going on with my shoulder they found a small syrinx 10 mm to 15 mm in diameter on my T6 . I don’t have pain I’m not hurting but the more I read about what is going on the more I get scared the more I start crying my wedding is in 42 days I feel alone I do you have the numbness and tingling from just underneath my armpit down and to my pinky that’s all I have right now I don’t know if it will go away I won’t know for another 4 to 6 weeks due to the injury I didn’t have an accident either or fall, but I’m guessing it’s something more. I have an MRI on Monday to see if I have anything going on with my neck I’m 31 years old getting ready for my wedding and was planning on having kids. I don’t have pain I’m not hurting but the more I read about what is going on the more I get scared the more I start crying my wedding is in 42 days I feel alone I do have the numbness and tingling from just underneath my armpit downed to my pinky that’s all I have right now I don’t know if it will go away I won’t know for another 4 to 6 weeks due to the injury but I’m guessing it’s something more. I have an MRI on Monday to see if I have anything going on with my neck I’m 31 years old getting ready for my wedding was planning on having kids I’m a trainer and nutritionist and from being so active I feel like my life is going to have to slow down. The doctor told me that not to worry about it right now but knowing me and how OCD I am I go on and I just read and read and read because I want to handle this now I don’t want to end up worse. I don’t know what to think and I don’t know what to do any advice would help and I greatly appreciate it.

Anonymous said...


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Unknown said...

I was in a high spped rear end accident nov. 17...i have a syrnix 2 mm from t4 to t12...the thoracic pain has been horrible which is why i had the mri. Doctor tell me it cant be causing the pain but i also was very active and now so good just walking at the grocery store...have been to numerous doctors and am down to pain management but still they say that this is self proclaimed...uhg so fusterating

Unknown said...

I went to cleveland clinic and saw a neurologist then a neurosurgeon to my understanding they will not do anything surgery unless you are completely dibilitated pain management and some visual classes were recommended...they both agreed it surely could be causing my pain but nothing they can do about it i have 2 mm syrnix from t4 to t12 after hifh spped rearend accident

Ahne SD said...

Great post

Sports Medicine Doctor Near Me

Unknown said...

How do i deal with disability health insurance? Im so lost i cant funtion and the syrnix seems to be ignored or to small 2 mm from t4 to t12 with buldges i dont understand...continuded severe pain leg weakeness that is unexplained after a high speed rear end the are saying i can go back to work with no restrictions...how is that possible being in the condition i am!!! How do i prove that??

Anonymous said...

I too have a syrinx in my upper spine/neck. I have varying levels of impact in the form of dysfunction and pain impacting everything from head to toes, especially on right side from car accident. I take Gabapentin and Tizanidine daily and ibuprofen for the head pain as needed. It impacts me everyday! I supplement with Magnesium, Riboflavin, Acetyl L Carnitine, and Alfalfa which helps. I have not gotten much help from doctors as they tell me that a syrinx should not impact you. I wish my body felt that way.

Unknown said...

T7-T10- same shit. 1mm wide- pain gets unbearable with activity. Flexitrol keeps under control when laying down prone...Any movement and the shit flares up.

Car accident- no sign of ciara or whatever. Doc thinks I'm making the symptoms up

Rajinder Singh said...

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Thanks For sharing Great information with us.
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Joyce Hillary said...

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rtusharkumarrastogi said...

Thanks Douglas, some good points. However, I disagree with the usefulness of local injections to localise disease. This is notoriously unreliable, and I think the saga of discograms has shown that. Also, if used for localisation of pathology, why not use local anaesthetic only, because I dont' think the steroids do anything?
Regards
https://www.kentmskclinic.co.uk/ultrasound-guided-spinal-injections/

Anonymous said...

I am bold enough among many others to state that there is now a potent cure to this sickness but many are unaware of it. I discovered that I was infected with the virus 3 months ago, after a medical check-up. My doctor told me and I was shocked, confused and felt like my world has crumbled. I was dying slowly due to the announcement of my medical practitioner but he assured me that I could leave a normal life if I took my medications (as there was no medically known cure to Herpes). I went from churches to churches but soon found that my case needed urgent attention as I was growing lean due to fear of dying anytime soon. In a bid to look for a lasting solution to my predicament, I sought for solutions from the herbal world. I went online and searched for every powerful trado-medical practitioner that I could severe, cos I heard that the African Herbs had a cure to the Herpes syndrome. It was after a little time searching the web that I came across one Dr Itua(A powerful African Herbal Doctor), who offered to help me at a monetary fee. I had to comply as this was my final bus-stop to receiving a perfect healing. My last resolve was to take my life by myself, should this plan fail. At last it worked out well. He gave me some steps to follow and I meticulously carried out all his instructions. Last month, to be precise, I went back to the hospital to conduct another test and to my amazement, the results showed that negative,Dr Itua Can As Well Cure The Following Desease…Cancer,Hiv,Herpes,Shingles, Hepatitis B,Liver Inflammatory,Diabetis,Fribroid,Parkinson's,Alzheimer’s disease,Bechet’s disease,Crohn’s disease,Cushing’s disease,Heart failure,Multiple Sclerosis,HypertensionFatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Scoliosis,Autism,Fibromyalgia,Fluoroquinolone ToxicitySyndrome Fibrodysplasia Ossificans ProgresSclerosis,Seizures,Adrenocortical carcinoma.Asthma,Allergic diseases,,Copd,Glaucoma., Cataracts,Macular degeneration,Cardiovascular disease,Lung disease.Enlarged prostate,Osteoporosis.
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Anonymous said...

hello i had a cervical epidural done by my neurologist. After he injected the lidocaine my whole left side started burning bad and i felt as though my left side of my body went numb. i sat up in terrible pain with my left arm stuck by my side. I went to get up and i couldn't walk. MY doctor sent me home with prednisone and told him to call me in the morning if i didnt feel better. I went to the ER the next day I had an MRI done and they found a syrinx in c5 to T4. I had an mri done a few months before and the doctors at the ER reviewed my old mri that originally said there was no syrinx. it took me a few days to get back to walking, and its now been 3 weeks and i am still weak and struggle to get through the day.Most of my right leg is numb. I have an appointment with a neurosurgeon soon and I am very nervous on what this means for me. I still wonder if there was neglect on my doctors behalf or was the MRI not read correctly the first time?
it is nice to see im not alone. But there needs to be more research done before some one just injects a needle in someones neck

Unknown said...

I had a c5-c7 discetomy and recently had my spinal cord Nick with steroids I went to the hospital and found out I had a tumor from c3-c6thier was no surgery done because of swollen spinal cord,the result I have no feeling in my left side and is numb feels for me my left side is ice cold,my both hands and constantly pins and needles tinging sensation,I was on lyica and steroids which was horrible I'm going for a second opinion because I also have servere cervical stenosis.
Anyone have these symptoms or suggestions.thankd

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marry lawson said...

HOW I GOT CURED OF HERPES VIRUS.

Hello everyone out there, i am here to give my testimony about a herbalist called dr zubby. i was infected with herpes simplex virus 2 in 2013, i went to many hospitals for cure but there was no solution, so i was thinking on how i can get a solution out so that my body can be okay. one day i was in the pool side browsing and thinking of where i can get a solution. i go through many website were i saw so many testimonies about @dr_zubby4 on instagram on how he cured them. i did not believe but i decided to give him a try, i contacted him and he prepared the herpes for me which i received through fedex courier service. i took it for two weeks after then he instructed me to go for check up, after the test i was confirmed herpes negative. am so free and happy. so, if you have problem or you are infected with any disease kindly contact him on email via dr.zubbysolutionhome@gmail.com. or / whatssapp --+2348070673249
This testimony serve as an expression of my gratitude. he also have
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patrick morrison said...

HOW I GOT CURED OF HERPES DISEASE
I'm here to testify about what DR. ANUGE did for me. I have been suffering from (HERPES) disease for the past 5 years and had constant pain,especially inside my body. During the first year,I had faith in God that i would be healed someday. This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came across a testimony of one lady on the internet testifying about a Man called DR. Anuge on how he cured her from herpes disease. And she also gave the email address of this man and advise anybody to contact him for help for any kind of sickness that he would be of help.so I emailed him telling him about my (HERPES) he told me not to worry that i was going to be cured!! Well i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as DR. ANUGE assured me that i will be cured,after some time. i went to my doctor to confirmed if i have be finally healed behold it was TRUE, the test came out negative. So friends my advise is if you have such sickness or any other at all you can contact DR. Anuge for help. Email} dranuge@gmail.com WhatsApp /call +2348164866838

bobbie martin said...

I'm so excited to share my testimonies about the Good Work of  Dr. Anuge who got me cured from herpes simplex virus (HSV1&2) with his herbs, I never thought that I would live on earth before the year runs out. I have been suffering from herpes, I had spent a lot of money going from one Hospital to another looking for a way to get rid of this disease, the hospital has been my home everyday residence. Constant checks up have been my hobby not until this fateful day, I was searching through the internet, I saw a testimony on how @Dr_anuge7 helped someone in curing his herpes disease using his healing Herbs, quickly I copied his email just to give him a test I spoke to him, he told me that he is going to provide the herbal cure to me, which he did, after I received his herbs and I took it as instructed. I was cured permanently from herpes. My herpes disease was gone. so I decided to share my testimony, that nothing is impossible with God, God used a man to heal me. No matter what you are passing through, no matter how deadly the sickness is and no matter what the situation is God that did mine is still going to do yours, people suffering from herpes, brain tumor, kidney disease, pcos, AIDS, ALS,copd, asthma, arthritis,herpes, Cancer,Hpv, any kind of disease, you can reach him now via ? Gmail address: dranuge@gmail.com or whatsapp +2348164866838

THitchcock73 said...

I have had arm and shoulder pain since the beginning of March of 2023. I had went to my doctor because I was tired of dealing with the pain I have been going through. He ordered x-rays and referred me to an orthopedic surgeon to follow up with my shoulder pain. It did show up that I had some osteoarthritis in my right shoulder, but my doctor was more concerned with what showed up on my cervical spine. He then ordered a MRI of my cervical vertebrae. The cervical MRI showed a small 1mm syrinx at c2 level that may be 2 adjacent syrinx in this region. There was also a 12.8mm in length and 2mm at its AP dimension along its posterior aspect.
At the c3-c4 there is broad annular bulging/mild broad disc protrusion with a prominent asymmetrical left paracentral/lateral component contributing to left thecal sac effacement and mild spinal canal stenosis. Lateral component of annular bulge/protrusion contributing to moderate to severe left foraminal stenosis and no significant right foraminal stenosis.
At the c4-c5 level there is broad annular bulging/mild broad disc protrusion in combination with ligamentous and facet hypertrophy contributing to mild canal stenosis. Lateral component of annular bulge contributing to mild bilateral foraminal stenosis.
At the c5-c6 level there is broad annular bulging/mild broad disc protrusion with a slightly more prominent asymmetrical left paracentral component contributing to mild canal stenosis. Lateral component of annular bulge/protrusion contributing to moderate right foraminal stenosis and no significant left foraminal stenosis
At the c6-c7 level there is broad annular bulging/mild broad disc protrusion contributing to mild spinal canal stenosis. Lateral component of annular bulge/protrusion contributing to moderate left foraminal stenosis and mild right foraminal stenosis.
I had another recommended MRI of my thoracic spine to rule out any further syrinxes. No further syrinxes, but at the T11-T12 there was a small circumferential disc bulge that has effaced the ventral subarachnoid space.
In 2020, I had thrown my back out and had to have a MRI on my sacral vertebrae. I had a disc herniation at my s1-s5. Can this have anything to do with what I am going through?

I was hoping to get some understanding with all this if anyone could help me. It is 3 months later in June 2023 and I am still having pain in my right arm and back. I had a tingling sensation down my right arm to my right hand the other night along with some piercing pain. The stiffness in my arm and across my shoulders and neck is not letting up either. Please, respond and hopefully shine some light to what is going on with me. Thank you.