I noticed that this post gets more comments than any other. Allow me to comment further:
We are in the dark ages of treatment for syringomyelia. There is a lack of education for physicians on what syringomyelia does to a person. The knowledge that is out there is flawed. The biggest problem with it is that physicians (especially neurologists, it seems) focus on the following faulty logic:
There exists patients who have a large syrinx and no symptoms.
Therefore a small syrinx does not cause symptoms.
This is simply incorrect deductive reasoning. It is like saying "there exists a woman who wears no shoes, therefore, all women don't wear shoes".
This pervasive knowledge that a small syrinx cannot cause symptoms is patently absurd. Take my example. I had dermatomal numbness in my pinky and ring finger. First we tried to rule everything else out. MS, vitamin deficiency, carpal/cubital tunnel syndrome. After all that, and a number of dismissals by my GP and neurologist, I insisted on a cervical MRI. My GP chided me for wasting money and perscribed an antidepressant (which never did help). Guess what the MRI showed; a syrinx at C7--the exact dermatome where my first symptoms occurred.
For those of you who have left comments on my original post with similar stories, here are a couple of tips for you:
- See a pain specialist if your other doctors aren't responsive to your needs.
- Shop around for a good primary physician or neurologist (good luck) who will listen to you.
- Try walking every day. Nothing strenuous--but get a pedometer and walk 2 miles every day if you can tolerate it.
- Avoid straining or heavy lifting. 15 lbs is a good limit for anyone with a symptomatic syrinx.
- Get involved--channel your pain into helping all of us who are afflicted with this painful condition and are getting poor medical care.
Also, see my post about pain medication I've tried for syringomyelia.
There are two parts to the posting. Consider printing them out and taking them to your doctor to discuss each drug. Neurontin is the #1 treatment for nerve pain from a symptomatic syrinx--but I've taken it for a couple of years now and it has some negatives. I don't think constant therapy with narcotics helps--and it may actually hurt (according to some of the brightest docs, e.g. Dr. Barth Green IIRC). They make you weak, depressed--that's the last thing we need. Episodic treatment is ok though. Sometimes you just need a break from intense pain.
The most effective drug for me has been dexamethasone, a potent steroid I first tried when I had detethering surgery (that drug seems to have helped more than the surgery). Unfortunately, this is not a drug you can take continually. I find it useful to treat occasional flare ups, but you may need something else to help you sleep--or you'll end up staring at the ceiling all night.
I look forward to hearing more comments from you. Remember: Positive Mental Attitude (PMA). ;-)
19 comments:
Neurontin seems to be a tremendous help for me, as well. I periodically check your blog to see if you have any detailed update on your condition after SFT surgery. I had the SFT surgery at the end of July 2008 at TCI. I am worse off than before the surgery. I'm bedridden most days. Before, I drove (short distances) to do grocery shopping, walked around quite a bit (although I often became fatigued), and was pain-free about 80 percent of the time (and without meds). Now, I'm in pain about 85 percent of the time and am taking 1800mg of Neurontin per day. Strange, isn't it?!
I'm particularly concerned about the heavy shock-like pain I experience almost constantly. The neurontin has dulled this pain but without the neurontin, it feels like I'm holding onto an electric fence 24/7. Did you experience shock-like sensations after the SFT surgery? Also, have you ever had the decompression surgery?
Thank you so much for your blog! It has been a GREAT source of information for me! It is a glowing light in the dark!
I have gotten completely off the antidepressants and narcotic pain relief for the neuropathic pain, and am taking an herbal supplement called Rhodiola Rosea. It has helped tremendously with the pain... the dull aching pain as well as the sharp electrical pain. Please do some research on this amazing herb.
Thanks for the knowledge,I have a spinal syrinx, that cannot be messed with, and the "Smaller is harmless" idea is patently absurd. My little gem causes stabbing burning that cannot be described. Neurontin did nothing for me, but narcotic pain pils have been the only consistant help.
Diagnosed with arnold chiari condition at age 24, had the decompression surgery. I am noe 41 and have constant and non stop pain in my thoracic area that is intense and now is starting to feel like i am trembling from within. I am now having spams and weakness in my left pinky finger. They tested my ulnar nerve and said it was fine so they are baffled bc they dont think my syrinx could be causing this.
They tell me that my syrinx is too small to put a shunt in and bc the fluid seems to be flowing properly that I do not need this. However, all of the meds they are giving me provide little to no relief. I have spent thousands of dollars on all of these tests and injections and meds, therapy, massages, etc and I am not getting better. I am getting worse. i have total weakness, cant sleep from the pain and cant be active at all. I am not able to st at a desk and do my job right now and I can not do physical activities with my children. I have become depressed and the doctors say " thats understandable, lets put you on an antidepressant" How about get me some help so I can at least have a somewhat functioning normal life. I cant work, cant run or walk, cant lift anything heavy. They have tried lyrica ( bad side effects) gabapentin ( did nothing) cymbalta ( horrible side effects and did nothing even with my mood) now they have me on a high does of naproxen and amitrptiline ( sp? ). I have only been taking this combination a week but have seen no improvement. It takes mlos to get in with any of these doctors and in the mean time I am supposed to just put my life on hold and live in misery while they continue to guess at how to fix me.... Anyone have any words of encouragement or hope? My syrinx runs from c1-t9.... Doctors have run all kinds of tests on me and other than this they can find nothing wrong with me but tell me my syrinx is too small to be this problematic for me. My reflexes are hypersensitive, no idea why. I still have my other senses in tact but I am starting to feel weak in my legs as well. My pinky finger is getting really bad and if that is not my ulnar nerve, what is going on?
Please help...
The last post captured some of the desperation and panic, that I think those of us diagnosed with a syrinx (big or small), feel most of the time.
Having had intense and throbbing pain in my face for three years I was finally diagnosed with having a syrinx. However, due to my consultant being away and a few other bungles, which unfortunately I had to officially complain about (not helpful when you are ten on the pain scale and trying to keep it together so you can work) it will be three months between a hasty meeting where that was mentioned and my first proper prognosis consultation where at the last brief encounter, surgery was to be mooted.
In this interim, my condition has revved up to 'Fast and 'Furious' proportions. I suddenly lost the use of my leg and it was accompanied by an intense burning pain in my foot and ankle.I felt ridiculous limping out of work and God knows how I drove home. My leg was weak, swollen and painful and mirrored the face pain I had had for three years.
I knew there was no point calling a doctor. My GP has already said that the meds I am taking are top end (Toparamin amongst others) and conventional pain killers don't work with nerve pain anyway, much to our desperate chagrin.
The following week I went into work stubbornly thinking I could grit my teeth through it. Fool. Within half an hour I needed an ambulance. However, even despite the fact that I seemed to have a bad spell where I lost the use of my legs and my speech faculties, I STILL have to wait to see my consultant. My GP is not a specialist but isn't too interested either and the only source of information is the internet. Wonderful though this is, you do need to be selective and cautious and I would really like to have A) a conversation with a medical professional and B) a conversation with a medical professional who cares.
Perhaps the latter is a bit too much to ask for.
As it stands, it seems that my condition has deteriorated rapidly in the last few months and I feel medically rudderless. This syrinx lark is no joke chaps, is it?
Diagnosed with Fibromyalgia and c5 c6 arthritis with bone spurs for 6 years. Finally convinced my Dr to get an MRI of my entire spine, not just the cervical, and obvious visible damage but the painful thoracic and lumbar too. They did everything except the lumbar, because I couldn't be flat in the MRI machine any longer, it was over an hour and a half,and my pain was too severe, so who knows about that area.They found, severe narrowing in my c5 c6, and a syrinx with insult to my cerebellum. So my cervical spine has gotten incredibly worse, and they found a 3 mm syrinx in my t12 to l1 l2 region. My primary Dr sent me to an orthopedic surgeon, who said, none of this is causing your pain, the Fibromyalgia is causing your pain. I call BS....
I worked for Frito Lay, 26 miles a day of walking, and lifting bending standing reaching all day, along with pushing and pulling huge loaded carts up and down ramps and in and out of trucks, not even counting the end of the day smashing of the empty boxes. I was always physically active and healthy until 2007. The only other problem I have is hearing loss, worse on the right side, which happens to also show up on my MRI as the most damaged side. I just struggled from 2007 until 2009, when I had to take disability, SSDI, because I just couldn't do my job. It was do that or be fired. I was getting slower and slower on my route, and my days were so crazy long,loke 18 hours or more, because I could barely move, and was in pain.
I'm not sure if anything has changed since the first post on this is 2006, but it is now 2015, I have gained some weight , can barely walk, none of the pain meds ever helped, only made things worse, back in 2009, so I just live a life of suffering, mostly stay home alone and have never felt so let down, as I do by my Drs, who have never failed to take all my money, but I have found no relief from the pain and life is just wake up, hurt and sit online looking for any sort or help or answer, instead of being dependent on drugs. Swimming seems to help, but I don't have an indoor year round place to swim. Physical therapy has been a waste. I honestly am about to the place of giving up. This is just not living a life, this is existing in tortuous pain, day by day and getting worse. But the good news is, my heart, lungs and health otherwise is great, so I'm 49 now, and if I make it to say 80, I've got about 30 plus years to look forward to.
Wow. Today is the first day it occurred to me to check for blog sites on Syringomylia and I am absolutely amazed to read comments from so many people who have this condition. I've felt so alone in this struggle for years, despite the support of my husband,family and close friends. So many of the Commenters on the blogs have my symptoms, like electric shocks,stabbing pains and extreme nerve pain that have all increased rapidly in the past few months, along with the Doctors that have cost me thousands of dollars in test and mis-diagnosis. It has literally taken over a year to get this diagnosis. Additionally, although I was diagnosed with this illness, my Neurologist told me very little about it; guess he's waiting for the test results from my third MRI in the past year. But just reading the blogs, I have learned alot about the suffering of so many people and the trials they have gone through trying to deal with this illness. Although I would not wish this ailment on anyone, it is comforting to know that I'm not crazy and that the weird symptoms that seem to plague me are not my imagination. I will pray for us all as we continue down this road of discovery.
I am a 34 year old mom of 4 suffering from severe pain for 6 years. I was diagnosed with a very small syrinx in the lower c spine. My symptoms are EXTREME right upper back/shoulder fatigue/burning/ache/pain, pain to posterior arm and numbness of ring and pinky finger. I also have a throbbing in the posterior head and neck. They say my syrinx is traumatic, but I have no history of a major trauma. I have done chiropractic, meds, physical therapy, spinal injections and have seen so many doctors I can't keep them straight. I have spent thousands on this and not one doctor or specialist can help. They have no clue what they are doing when it comes to syrinx. They believe what they are taught/told and that is that small syrinx ' s are asymptomatic. I'm miserable. When I'm in pain my whole personality changes as I try to just get through the day, then when I get home I can't enjoy my family. It's life altering.
Hello to all my fellow syrinx suffers. I was comforted to finally see other people knew that the shock like pain is. It feels like a guitar string being strung, shock like down my body. Doctors didn't seem to understand what it was. I recently, thru a MRI found a syrinx in a area of my spine where I had a previous rib trauma. I had been to a neurologist for migraines and feels of numbness in my face. He had previously diagnosed my right hand pain and numbness to carpel tunel. I was establishing a new pain doctor and thank God they did and MRI on the mid back where I was experiencing horrible pain that went up to my neck to my head, down my right arm. I have fibro too so pain really flares.
My question is what is the best ways to treat flare ups? Ice? Heat? Anti inflammatory meds? Chiropractor?
I know pain killers can help but I try to stay away or limit them. I am ready to put a sling on my right arm to avoid using to help stop irritating syrinx.
My healing thoughts to you all and thanks for any advice.
Putt-Putt 57, Hey guys, I am 7 years post laminectomy x 3 with decompression of my spinal cord.My surgery was performed at NIH in Bethesda, Maryland as part of a study on syrinx to determine cause and how pressure effected it. As with most everyone that has posted on this site chronic excruciating pain is a main topic.My syrinx is currently 3.5 cm x 1.4 cm from the C7 thru T2. Prior to surgery I worked as a nurse,exercised,walked etc, very active but in excruciating pain for five years. I had began to think I was going crazy as I went from Docto to Doctor and them telling me nothing was wrong with me.Finally I could not even make it through two procedures at work, went to neurosurgeon that told me nothing was wrong with my back.But to his credit he saw the desperation in my eyes and sent me to a neurologist.Thank God the neurologist listened to all my crazy complaints then did neurological checks which confirmed I had something going on. He ordered the appropriate MRI's and there it was in all it's glory the SYRINX.Hooray I wasn't crazy, hypochondriac etc. Unfortunately surgery nor pain meds have ended my torment but it is bearable. I no longer exercise as I had because it exacerbates the symptoms. I am limited to lifting 5pounds sooo difficult when you have grandchildren. As with everyone with a syrinx, size doesn't matter, now if we could only convince the medical field. Would love to hear from others with this condition as I only know one other person.Have a good day.
Me and my stuff.
Just read your desperation and wanted to check how you were getting on? My son (36) is the one with the Syrinx. So I check around for information. I am in chronic severe pain with another diagnosis. So can empathise with those in constant pain and the feelings that leads some of us to. Please if you read me check in and let me know how you are doing. UK here. Take care xx
Hello Amy-I was diagnosised after I had another Crohn's resection surgery with no symptom relief-the infectious disease dr they sent me to did numerous test including a MRI & told me I had Syringomyelia-like most everyone I had 0 idea what it was & the only thing dr said was "I'm sorry!". Went home & looked it up & figured it was trauma based from when my horse spooked & ran us both into 40mph traffic-horse ran away after-I used face/arms to slide across asphalt till head hit curb/comatose for weeks after-then years later I get the SM diagnosis-I also have tried all treatments-now go to pain mgmt & use heating pads on affected areas to lessen pain-tried cold & it hurt worse-also have tried shots which really made pain worse for weeks-chiro is also said to be a big NO NO with SCI's.-antidepressants do 0-mine are located T-3 to T-5/T-7 to T-8 & then T-9 to T-11 along with various hemongiomas, disc & DDD problems. Luckily my kids are grown & on their own cause I have hard time taking care of myself & husband anymore. My best advice for everyone is do whatever you can to push for pain mgmt & use breathing & heat at home-been dealing with this for 14 years now & fighting like crazy to avoid spinal surgeries & wheel chair-have had 8 surguries for Crohns & other stuff but do not ever want spinal!! Risk way too high/results not always good & probably need to be redone-no thanks
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I feel for your pain. First wow, your syrinx cover a long area in your spinal cord. No wonder you are in pain. Have you seen a neurosurgeon about removing? That is what I am working toward. I have a syrinx T7 -T4 if it hasn't grown. My dr is waiting for me to lose lbs before she will do surgery. A rib is removed to get to thoracic area. I also have fibro. So for meds- I really feel Gabapetin help with pain ALOT! What it does is trick/trains your brain to ignore or not recept the pain feeling. I take 1200mg twice per day. I mixed up meds & took 800mg a day and I felt the pain again so much. I felt how much it does - I take no pain meds, only ibuprofen & tylenol- muscle relaxer, med marijuana. I also take Savella which is the third drug in the - Lyrica(not safe) Cymbalta (didn't do it for me). Savella is another wide spread pain med. Give it a try. Now my syrinx is thoracic, I minimally use my arms because overuse will flare up the syrinx and there no helping that pain. As you mentioned, it is also felt in extremities. Numb legs, right side of body. When that syrinx flares up it stops spinal fluid flow & can pinch nerves. Ice maybe some relief. Honestly I had to leave my job due to my conditions. Hope I mentioned something of value. My hopes for our wellness.
Jana- Hi I just saw your reply. I wanted to mention that I am gearing up for surgury. I am having my thoracic syrinx (T7-T4)- as of last year- removed. It had grown about a disc size in a year. My neurosurgeon wanted me to lose some lbs before surgery. It will require removing rib. I feel I have to do this because the syrinx can actual kill cells in your spinal cord, enough to eventually make you paralyzed. I see you were down on surgury, were and spinal cord? I have to limit arm use because of thoracic area will flare up syrinx and can't do much to help that pain. But I wonder what it feels like after spinal surgery and what recovery is like. I definitely give you a lot of credit having for kids to deal with and also having the pain that you do. You must be a superwoman and I hope you have support around you of family and friends. God bless you
I just wanted to reply to your post and say don't throw in the towel. Enjoy the little things in life and try to find things that make you happy. There's always some quality of life that you can enjoy. One thing I would ask you is if you ever tried Gabapentin because that is the medication that definitely keeps a lot of my pain at Bay. It change your brain to ignore the pain and not recept it. Also you're fortunate you don't have to work so you're not overworking your body and creating more pain which is good. It's great that exercising in the pool helps and you should try to find a health club with an indoor pool. Sometimes insurance may I offer savings or if you have a spouse that has a job let me offer savings for employees? Aquarobics are definitely the best and easiest exercises that are not impacting. Of course trying good old ice and Heat wax at times. Getting a heated blanket can really help because you can wrap your whole body in it and get relief. I also take Savella which is the third choice of fibromyalgia medicine which is working great. And you said you put on some extra lbs which of course never helps with pain so maybe try to cut out the white - sugar and flour for a while or just eat healthy 5 out of 7 days a week. But never give up you're still breathing and have healthy organs for a reason. You have a brain and that gives you the ability to help other people so make yourself useful in that way. Your life is not over but it is just painful at this time. My heart definitely goes out to you because I know your pain. My brother took his life this year and I feared from your post that I heard it in your thoughts but I'm glad it said you have 30 years to look forward to. Godspeed
I also wanted to post that my doctor in Phoenix Arizona at Barrow neurological Hospital - Dr. Laura Snyder, has now listed Syromenengillia as one of her specialties.
I have been bedridden in horrible pain for 7 months and yesterday I had an epidural. I went to my daughters track meet snd have been active all day. I feel so much better!!! No pain medication has worked over the last 5 years. I’m praying for continued relief. I was told my syrinx was too small to be causing my issues. Umm I don’t think so bc this relief is amazing!
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