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...

64 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!!

Danette B. 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.

Claire 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:)!!

Melissa 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...

oargurl 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

L.P Alexander 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?

Tammy Bates 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!

Curtis Davis 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....

JonandTasha Roberts 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...

Robert Hart 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.

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Janet's Beloved said...

I have a great nuro and i take gabapentin, tramadol, and ibuprofin for my syrnix symptoms and when i can tolerate it i take baclifin for muscle cramps. The best info i have found is in these 2 sites.
http://asap.org/
and
http://www.chiariinstitute.com/
I had to become my own advocate and hope to go the the chiari institute some time this winter.

Mia Ponce said...
This comment has been removed by the author.