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Cervical Myelopathy symptoms

Started by Bendy on 01/04/2011 9:11pm

I have a very complicated medical history the last 5 years ~ It kinda started with severe osteoarthritis in bilateral hips - so I had 'em replaced end of '05. Things went well aside from the fact I had trouble rising out of chairs and was denied by my surgeon to have PT. I insisted and began water therapy ~ they 'fired' me because I could not meet their protocols because of severe knee pain. Okay fine - so 3 years later I have bilateral knee replacements. This recovery is where the problems began.

Afterward I could not use my right leg -- meaning I could not get the leg in a car, go up a curb - the hip flexor just wouldn't allow me to use the leg. 7 mos. of PT and it finally came back - though lots of pauses and thought process go into going up a curb even now. It can be done - but it's like there's a delay in my brain to the muscles or something.

Next I began with pain in my hands, elbows, shoulders, neck and of course bilateral new knees. Soon I had foot pain and tingling bilaterally. I was a flipping mess as they say - but no reason for it! For two solid years I've sought answers - counseling the best docs in America. I can no longer work at my profession & am in the disability system - something I abhor but am nonetheless very greatful for.

Recently it has been proposed that I have an underlying connective tissue disorder - Ehlers Danlos Syndrome. That was nice for explaining new and chronic pain in mid-life ~ Dr. Brad Tinkle has written nice affordable written books on the condition and I sought his input as well as others in the genetics field.

Still though - my legs aren't 'right' -- I have to push myself out of chairs with my arms - and my arms suffer from doing that - as do my hands and fingers. They hurt all the time and I have pain management helping me tackle this new widespread chronic pain issue.

Somewhere in all this I was sent to an arm ortho - who determined I need a neck MRI - it came back and he sent me to a spine expert who said, "that's a normal 53 year old neck" -- even though the arm ortho thought otherwise...

Fast forward - one of the EDS specialists had me see a neurosurgeon who believes all of my leg and arm issues - the weakness and clumsiness - along with urinary frequency, nocturia, constipation are from my neck. Cervical Myelopathy - and he wants to fuse three levels along with foraminotomy's.

I though the urinary issues were from being overweight and over 50. The constipation from the pain meds. BUT I have no explanation for symptoms that move from mild to "I know I have MS or ALS - I feel like I'm slowly dying" ....

The kicker is that none of my pain from the neck is bad at all. It's mild. In fact all of my pains bodywide in the joints - from myofascial pain to arthritic pain to neuropathic pain -- is mild to moderate -- when it's a symphony all going at once - head to toe so to speak it can be overwhelming but that's when pain medicine helps immensely.

I read the MRI, the CT scan in flexion and extension - and the one area of concern is primarily C4-5
There is disk herniation abutting and possibly mildly compressing the cord - with severe bilateral foraminal stenosis. The area above has mild disk issues and mild foraminal stenosis - the area below is a bit worse with severe disk degeneration and osteophytes and severe left foraminal stenosis but no cord compression.

So then I ask him - what happens if I choose to do nothing - as every surgery to help me has me get worse functionally. He says worsening of leg weakness, arm clumsiness, eventually in a wheelchair and then functional quadrapalegia. EGAD. Are you for real I'm thinking?

So - mild to mod. pain. "possibly mildly compressing the cord" on one level --- Yet my body symptoms spell Cervical Myelopathy quite well.

Then he furthers that my spine area is to be normally 8mm......mine is 4mm.... I guess congenitally narrowed and then this other issue? I think he meant 4mm at the area of c4-5.

I joined the community here tonight and read that most if not all of the candidates for surgery and those that have had surgery have had severe pain with a capital S -- and were hungry for surgery to help alleviate any of their pain. Yet in the end - the surgery post op is no cake walk - they have new and strange pains additionally to the old ones -- if not immediately - then within 5 years.

I feel I would be crazy to have this surgery . Truly. Yet when a very very prominent surgeon in the USA who is well versed in this procedure and in my other health issues tells me to do nothing will have me in a wheelchair -=- I so identify with that interiorly. That's exactly what it feels like. No exercise - no nothing helps me for long. I stop exercising I am back to square one - if I keep exercising I'm doing it out of fear - and the pain it creates worsens everything.

So even so I read that if you have myelopathy for over a year - the chances of it fixing your issues is slim - additionally I read that you need to fix things fast to avoid permanent damage from an injured spinal cord.

What would you do? Have any of you had SSEP's or SomatoSensory Evoked Potential testing done? Were the results helpful? I guess I feel all of me has EDS - so to focus on the neck - is silly as the rest of my spine isn't that great either. I've yet to have the thoracic are imaged - but that's where I get bad spasms and pain - the lumbar area is messed up too - with cord issues but not as bad as the neck ... Sigh.

Thanks for listening - Maybe you can identify with part of this story? LOL - Happy New Year!

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13 Responses


I had it and I can tell you it is terrifying. With an MRI and neurologic exam, the dr should be able to isolate it to the neck. If not, ask if emg (nerve conduction study) will help. I know in my case all four limbs were affected. It hit all at once, and went away, came back, went away, and so on. It wasn't until I had surgery c3,4,5,6 that I had full resolution of all symptoms. I would not put it off. I look at it like what if you are on vacation and this rears its ugly head? Or if you have to travel for a family emergency? you could literally find yourself stranded. If that isn't the problem, then I would get to the bottom of it and deal with it. These things are too disableing both mentally and physically and leaving them alone only makes them worse. There are lots of outstanding doctors on this site and I am sure a wealth of information on myelopathy. Go get another opinion, dont just rely on highly regarded dr's opinion. I have found the best advice from neurosurgeons. They typically are very conservative about doing surgery, and also are excellent about diagnosing these kinds of things. In my experience, if a neuro says I need surgery, then I probably do need it. Even then, I get a 2nd opinion just for my own peace of mind. Good luck.


Hi Bendy!
In 2004, I began having difficulty walking. Right leg was severely weak causing a significant limp. My leg would also give out at times. I was also experienced the inability to feel my foot and move my toes. Urinary incontinence also became an issue.
I was being seen by a neurosurgeon for severe lumbar pain at L5/S1. He kept saying that my symptoms described above were not due to L5/S1 deterioration. He treated the L5/s1 pain with epidurals x 3 with little effect.
I continued with the severe limp and weakness. Finally, he ordered a full MRI. My sister has MS and he was thinking I might be in the same boat. No MS, but was found to have severe cervical spinal cord impingement and recommended surgery. I was in the middle of nursing school and asked him what would happen if I waited. His reply, "you will be in a wheelchair in 6 months". I did not see any other choice and agreed to ACDF at C/4-C7 in December 2004.
Fast forward to today, I have since had a fusion at L/5-S/1 this past March. My neck has severely degenerated at the level above my cervical fusion. New neurosurgeon says I will need another cervical fusion in the future. I am in constant pain and have severe headaches even though I am in pain management. Also have severe bilateral arm weakness. I graduated from nursing school with honors in 2006 but have been unable to work since December 2010. Student loan remains. Just retained a lawyer to begin the disability process.
Even though I know I will need another cervical fusion, I don't second guess my decision of having the initial surgery. At the age of 36, being in wheelchair just was not an option. Degenerative Disc Disease has taken my life over.


Thank you for sharing mtsaz and RN!

I did get a second opinion this week at the Mayo Clinic. The neurosurgeon looked at my MRI from 09 the same way I did -- like it looks like the spinal cord is maybe mildly or possibly compressed - and not at all like - "get surgery or you will be a quad"... Then he looked at the CT is ext. and flexion and said, "see right here it says maybe mildly compressed and that there is NO instability whatsoever"... So I was like thoroughly confused as to whom to believe! Anyway I'll get further testing next week - to see on SSEP's if the cord is suffering in anyway. Something's going on as my left leg at the ant. lat thigh had severe pain that had me unable to wt. bear AT WORK! Then the right leg buckles constantly - I was in a bit of trouble for sure. The boss brought a stool over for me to sit on - I felt like a fool - my work is on my feet fully! Got home after that - was in a lot of pain - and felt so defeated by this mystery. Got out the heating pad, took my medication for muscles and pain - and cried. A bit later I got up and felt okay again. The left leg 'incident' seemed to resolve.
RN - I am glad you are getting disability things underway - that way when they accept you - your recent earnings as a nurse will likely be what they base your monthly amount upon. I think that's better than trying to limp along in little part time jobs here and there....even though I know you want to work and worked hard to earn your RN. If you can't work - you can't work.... Isn't it crazy that our NECKS for heaven's sake could be an issue for our bodies from head to toe? I'm still trying to wrap my head around that one LOL!


Hi Bendy,

I started having problems with my legs in 2005..they diagnosed me with Idiopathic Periphreal Neuropathy, I also had a rotator cuff problem and the ortho doctor ordered test on my neck and sent me to a spinal specialist. The spinal doctor wanted to go in thru the front of my neck and fuse 3 disc. I felt that this was frankensteinish and I thought my body just needed rest. As time progressed it became extremely difficult for me to go up stairs, I could not get up from a kneeling position without crawling and pulling myself up with my arms. I quit gardening of course. I thought the problems with my legs was the Neuropathy. In 2009 I started falling. I would just drop with no warning. I finally took a bad fall and smacked the back of my head and slung my rt arm out over a rail. My primary care doctor did nothing...not even order xrays. My rt arm was swollen and I could barely move it. I went to the ER and they xrayed my neck and shoulder. I had some parenthesia in my right hand. The ER referred me to an ortho doctor. I was able to schedule an MRI and made an appointment with an ortho doctor. ( I thought he was a spinal specialist) He told me I have myelomalacia and myleopathy. He said if I did not have the cervical fusion I could be paralyzed. This was what I had been told and did not believe in 2005. I had little pain in my neck. Terrible pain in my rt shoulder and arm. I scheduled the surgery not because of pain but because of a fear of being paralyzed. The ortho doctor did a posterior multilevel cervical fusion with instrumentation. Levels fused were C2, thru T3. That was when the nightmare began. I lost 2 pints of blood, I never saw the "Doctor" until the day I was released from the hospital. Immediately following surgery I was in ICU. I came out of the anesthesia with NOTHING for pain. The "Doctor" was off and the "Doctor" on call would not prescribe anything except morphine. I cannot take morphine and that was in my records because it shuts my bladder down. I was in ICU without pain medicine except for a pump that is for temporary relief only, and which incidentally, you are out of your mind with pain and dont even know a pump is there and you would not even be aware enough to pump the thing. Since the surgery...I have severe pain at the base of my skull, this pain spreads thru to my upper back and shoulders, the pain radiates into both my arms and hands, I have severe widespread whole body pain, with stiffness. I have NO MOBILITY in my neck and cannot turn my head to the left or to the right.
The "Doctor" says I am 100% and that it is my fault that I cannot move my neck because I did not go to PT. He never mentioned PT but..it was impossible for me to go because I could not walk because of severe pain my left leg particularly in the groin. The Ortho "Doctor" told me to take alieve, The Neurologist told me to take advil and my primary care doctor told me to stay off of it. Once again I ended up in ER and found that my hip was bone on bone and I needed a total hip replacement. The ER doctor told me that if his doctors were not taking any better care of him than mine were me he would be getting a new doctor. I went to a different ortho doctor for the total hip replacement. By the time I saw him my hip bone was shredded and out of socket. He said he did not know how I was walking. I had him check out my shoulders and he said that I have severe neurological impairment. He also ordered MRI on both shoulders. The right rotator cuff is severe and inoperable. The left rotator cuff is operable and I need to schedule surgery or it will get like my rt arm which I can barely use. I was diagnosed with fibromyalgia when I was younger, but I do not believe this is the cause of all my pain. To date I have been diagnosed with degenerative disc disease, fibromyalgia, rotator cuff and tendinitis inoperable, lft rotator cuff and tendinitis, periphreal neuropathy, myelopathy, myelomalacia, sciatica from residual disc at L4 level from a previous surgery, herniated disc with sciatica at the L5-S1 level. I have applied for Social Security Disability Benefits. I have been denied twice. The "doctor" that says my neck is fine will not order any test for me. I requested an MRI now that I am a year out. He refuses but he says I need to go to PT 3 x a week for the rest of my life but yet I am fine? From what I do know now from researching...Myelomalacia is a bleeding into the spinal canal, myelopathy is the progression of that injury. Some people get better after fusion, some stay the same and some get worse. I do know that if I were going have it done again I would only let a neuro surgeon operate. My "Doctor" would not even give me a prescription for a heavy duty antiflammatory. I am now on pain meds, muscle relaxer and anti inflammatory meds...but the pain never ever goes away, the meds mask it and so it is tolerable. I hope this has helped you. Get a Neuro Surgeon to do the surgery.


Big big hug to you DianeD.....

I can't see your note while typing this response - so it'll be tough to mention all that I found so striking. But first of all thank you so much for sharing your story -- we have more than a few things in common. So if I remember right, all of this started with the leg thing. I mean the weakness, trouble going upstairs, trouble rising from low seats or get up from kneeling? And that was diagnosed as some kind of neuropathy - without a known cause - can't remember who you said gave you that diagnosis. But anyway after that you had no real path of treatment - but had worsening mobility - when then you actually fell when your legs went out from under you - as you tried to protect yourself in the fall your right arm endured injury..... Somehow in that - an ortho surgeon decides that you have cervical myelopathy - and the malacia term that meant bleeding into your spinal canal area? To fix that he had to fuse a huge area of your neck and spine. But it didn't fix a thing. You did this because if you didn't - you could have become paralyzed by not doing anything further according to the doc. Somehow the multi levels fused together were to correct the myelopathy and myelomalacia - that was evidently squeezing your spinal cord - having your legs give out... It gets more complicated yet because you were dealing with an underlying severe osteoarthritis in your hip(s) as well - to the point of needing joint replacement. It might be fuzzy if any of your leg issues were attributed to the deteriorating joint ( though I've not heard of that weakness or giving out before needed hip surgery - just severe pain and inability to ambulate without a walker and then eventually just can't walk at all) Okay so then you have to deal with hip replacements surgery - when you have incidently found out that your shoulders are shot as well with severe tendinopathy and cuff issues etc...probably A/C joint arthritis and degeneration as well bilaterally. Using the walker etc. to help mobility while healing from hip surgery when your shoulders are suffering is mighty difficult. So one shoulder is showing that some damage done cannot be corrected surgically. The other shoulder needs surgery to help it along -- what is the surgery going to solve - did they tell you? My story is similar in that the shoulders are with severe tendinopathy and a/c joint arthritis and degeneration - and some partial thickness tears in the rotator cuff. I was told to get surgery to fix it - but I couldn't bear it. The doc's note said I needed it to preserve the integrity of the shoulder joint or something like that. Both arms work ok -- but I have to lift the left arm with my right to reach high. I guess I need to learn truly what happens when you don't have the shoulder surgery - I mean I don't fully understand what nerve damage can happen if you ignore cuff issues etc. The neck thing -- do your doctors still think that the myelopathy was causing your leg weakness? Are your legs still giving way with stairs hard to do etc. even though you had the neck surgery done? I truly empathize with the chronic severe pain issues.... I have a pain mgmt. doc and the pain is tempered by meds to help - but really doesn't go away with me either. In general over the last two months it is creeping up in severity - but so far I'm okay I guess. You however got new pains after the neck surgery ~ that's just not right & makes me sad - yet hopeful under a better doc's care - things might get better for you.

Did you ever have or do you have really bad mornings with extreme stiffness in your hands and arms? I walk in these itsy bitsy steps....I have to manually unfold my hands and I cannot close my fingers to make a fist -- so stiff.... & it all seems so 'all of a sudden' after my hip & knee replacements. After an hour or so and some motion - medication etc... I can get to walking almost normal and my hands will loosen up - but it's that first waking moment - when I'm at my worst. The other 'worst' is toward the end of working on my feet - or the end of a day --- and I simply must lie on my back in bed for a bit mid-day or I will simply fall down. I've been told repeatedly I don't have fibromyalgia and I don't have chronic fatigue syndrome - yet I do have chronic pain now and fatigue as well. They blame it on the inherited connective tissue disorder - and my right knee replacement is interiorly rotated - surgical error and maybe part of it my lax ligaments.

I have no clue what is causing what. But I have to see neuro again this week because of the fall at work, the inability to wt. bear on the left leg for a bit - at work too. Then today while cooking at home - I kinda laughed when I started feeling really bizarre - said to my cat "I better lay down before I fall down" - at first I tried to shake my head and shake it off -- I thought I was imagining things.... before long I had extreme heaviness in both legs - and felt really bizarre....like a massive magnet was pulling me toward the floor - I couldn't think or focus well - so grabbed a glass of water and rather quickly made it to the bed with my cell phone in hand in case I had to call 911.... In time - it went away - say 10 minutes - I felt back to my usual self... I just don't understand....at all.

But again a huge hug to you and prayers for some straightforward excellence in diagnostics for you and if surgery - than only the best for you there as well. Maybe someone at a major medical center would be in order now - like Mayo or the Cleveland Clinic - you know one of those places that cares for the more complicated cases. If insurance allows I would think about it for sure. Too many people are telling you scary things about being paralyzed - losing use of your arm etc...pushing you to invasive procedures -- yet the ones that have done this won't stand behind there work - and that's just not right to blame the patient when the outcome is less than desired. I'm sick to death of hearing that from patients who've done nothing but good - yet are made to feel they did something wrong --- it's simply not ethical...yet it happens seemingly all the time. Never is it from a surgeon stating he or she did something wrong...almost NEVER. Now how is it that a slice of humanity is free of mistakes on a workday?


Hi again Bendy

I did indeed have a lot of problems with my legs. (I never had neck pain - if I did it was mild and barely there until after the fusion) When I first started having problems my legs felt very heavy especially at night. (maybe from being on them at work all day) I had to sleep with a pillow between them because the heavyness was so uncomfortable and painful. Also my feet felt like the bottom of them were bruised and it was painful to walk. That was when I ended up being diagnosed with the periphreal neuropathy. I did not realize that myelopathy has the same symptoms as the neuropathy so as my legs continued to get worse I just assumed it was the neuropathy. I got to the point (and still cant) where I could not kneel, I could not go upstairs, I have a really hard time getting up from a sitting position. Like you when I get down or try to get up it was as if my mind and my legs were not connecting..over time my feet stopped hurting because I cant feel them anymore. I cannot perform the tandem walk (one foot in front of the other) I cannot stand on my toes or heels due to the neurological damage from the myelopathy. A spinal specialist told me (after I had the fusion by a different "doctor) that my problems are from the myelopathy and that it is aggravating the milder condition of the periphreal neuropathy. Since the fusion, I have widespread body pain, a horrible stiffness especially in my legs and hips, (my gait is slow and stiff like a wooden person and I hunch my head because of the neck pain. (it hurts to hold my head up) the pain is constant and gets very severe. I have a swelling just below the base of my neck on the incision and when I am in really terrible pain it is swollen and can be seen thru my clothes. I also have terrible radiculopathy, burning especially in my right upper back. Sometimes my upper back hurts even to just breathe. Since the surgery my right hand trembles when I write, if I hold a cup, or a coffee pot. My hand feels like my mind has to tell it to write. It is a missing connection between my brain and my hands. This has been verified by nerve studies. It is a delay in the brain signal. My hands also are painful and I have a hard time opening jars or even the door. I am extremely stiff in the mornings, during the night if I get up, if I sit for 20 minutes it is almost impossible to get up. I believe that the symptoms I am having are a progression of the myelopathy which they do not tell you may get worse after surgery. I believe that you do probably want the surgery (it is excruciating) because I believe the symptoms you have are cause from the myelopathy and it can cripple you and even kill you because certain disc control the nerves that control your breathing. Just get a good neurosurgeon that will be honest with you and does not just want to cut you and have you go away if you continue to have problems. I know you do not want them operating on your shoulders and I dont either. I can barely use my right arm like you I am over compensating with my left arm and I do have to use my right or left arm to hold the other arm up if I am reaching high. I also have quit using an over because I burn myself when I reach in with my arms to get something out of the oven. I am going to find out from the ortho doctor what I can expect since my right arm is inoperable. I have noticed that it is painful to drive because my right should is so bad. Also if you have shoulder problems you will notice that drive thru windows can be a painful experience. One more thing about the cervical fusion...I have no mobility in my neck and I have to turn my body at the waist when I need to turn my head. Driving is difficult because of both my neck and shoulders especially merging traffic because of the neck mobility problem. I take the backroads, I stay off the hiways, and I drive as little as possible. The one thing I can guarantee you and I think you know this already..it seems like when you go thru surgery as you did for your hips and your knees it seems to me that the body goes into shock. I felt like my body just turned on me all of a sudden. I have worked since I was 14 years old and I have done every job there is and was always very independent. Now in the medical settings when I go for a test people ask me if I need them to get me a wheel chair...I always say no, I am going to keep on keeping on for as long as I can. I did move in with my son a few months ago because taking care of a yard, a house and animals was too much for me. That was hard because I miss my house, my yard and my animals :-) but I brought some of them with me...I wish you all the best...with myelopathy you are caught between a rock and hard place..but it sounds as if you have been there before..Get as many facts as you can..and make sure the surgeon is willing to encourage you to ask questions. Be an advocate for your own health..I have learned that my body is my home and when it is not right...something is wrong..and if the "doctor" I am seeing will not give me the test I need than I will find another doctor. I have discovered that there really are bad doctors.
Get a neurosurgeon...and get a good one :-)


I have had 3 neck surgeries, 2 for myelopathy. I have never had severe body pain, but I still have radiculapthy and odd aches and pains. I had an emg recently and have one on the disk below both sides (right and left). I do have a tremor, both hands. I think it just comes with the territory. It beats the inability to button my shirt or eat, problems I had pre-op when they myelopathy was in full swing. You might ask your dr if traction will help. I got what is called a vital wrap, look it up, and use both heat and ice. I use traction with a pronex cervical traction device (look it up too). anyway, both eliminate the symptoms for a while and it really makes a huge difference in pain level and symptoms. Ask your dr. I too had a hard time with my legs--getting in and out of a car, or up from a chair, but the traction and ice have helped me--either with my spine, or allowed me to get my leg muscles stronger. Anyway it helps. you might look into it.


Thank you for posting! Three neck surgeries! You are a veteran as they say .... I appreciate what you wrote and I'll jot down the techniques you describe so that I can possibly give them a go here once this matter is better cleared up.

I did see the NS (second opinion guy) who truly felt that my issues are not the fault of my cervical neck.... So of course I say then WHAT then IS going on.... Frustratingly it may just be again a multi-factorial thing with having had the other surgeries and their anesthesias, the connective tissue thing, normal aging, some nerve damage from the other surgeries - that kind of thing. Yet after two years the symptoms persist and do seem a bit worse. While they acknowledge the physiological evidence on film of narrowing in the neck etc....they do mention a study where over a hundred normal people on the street had MRI's of the neck and many had horrid neck issues on the exams - but no symptoms. Yet I do certainly have unexplained symptoms....

I saw neurology today who again echoed the neurosurgeons belief that my issues are not of my neck. Adamant on that conclusion - but both the docs and I will await the evoked potential tests and their results to prove no spinal cord issue exists. Then I'm having another EMG on my legs because of that recent fall at work and bought of difficulty walking d/t upper leg pain.

Either way - I don't necessarily think one NS is right and one NS is wrong thus far. I just have two different viewpoints from two different great minds I guess. Each of which basically just want me to feel better and gain functionality as best I can. The nice thing is that the urgency of having a surgery - and the pressure to hurry into it has been totally dissolved. The hard part is living with a mystery so to speak - but truly I'm thinking time will tell with this. Either symptoms will dissipate or fulminate, they will either crop up new and different or fade away -- in the mean time I try to keep an open mind and not lose hope or heart in the matter. I was momentarily ecstatic at the idea that my symptoms had one root cause...momentarily terrified to have to deal with surgery again...now I'm going to just go with the flow as they say....
Your post gave me hope for some non-surgical ways to look into for something that may help - and likely not hurt....thank you!


HI, yes I have heard of that study. I am curious where do you live? i have had the evoked potentials, but only before and during surgery. That way they know if they did something wrong so they can fix it.

What I would do, is go see a physical medicine rehab dr. I dont know where you live, but I know some major medical centers have like a spine rehab, and the dr's are all phys med, rehab focused on diagnosing and treating spinal diseases. http://www.bnaneurospine.net/

That is a link for one in phoenix. You need a place like that so they can get to the bottom of your issues. This place is #8 in the US for neurology/neurosurgery so this is a rare thing. However, there are at least 7 others somewhere, I would guess NY, LA, Houston, etc. I dont know whwere you live but if you could go to a place like this, get dr's who have resources of neurosurgeons, neurologists, radiology and every specialty all to diagnose and treat spine problems, then you would make some progress. Its got to be incredibly frustrating for you. I really feel for you and I hope you can find someone who can help.


Hi to all! I am new to this community of cervical compression and meyelomacia but am so happy I found all of you.

I just had a cervical fusion this past June 2012 of C5-7. I was starting to improve and got a great job. Two and half months later they fired me because of concentration problems...I was making mistakes as a medical secretary...not good! I've applied for disability and have been denied once. I tried to fight this but failed. Just had another MRI and now I have kyphosis which is like "whiplash". My neck is growing and forming in a straight mode. It kills! Went to Neurogist today and my muscle weakness and arm pain is cause my the meyelomacia. My right leg is weak and my right arm is weak along with my forearm and shoulders. My lumbar is so painful and I fight all night for strenghth. I'm fine in the mornings but by 2:00pm everything starts. Been to PT for the past 2 years. I'm on Lyrica but this is not working very well for me. Any hope on this myelomalcia weakness? How many years have you guys been dealing with this? Did anybody win their disability case? I used to be able to climb trees 2 years ago...this is aweful...now I can hardly do anything. My neck is in straight mode and can't even sit at a desk for long. Is there any hope?

Love to all!


In 1997 my car was hit by a lorry. When I returned home I could not lift my head up off the table I had severe neck and right arm pain. I went to casualty and was told I had a mild whiplash and would be fine in a few weeks. I was still in the same pain and I eventually had an MRI scan in 1998. Clinical tests revealed that my reflexes in both arms were absent but I was told the MRI scan was normal. I kept returning to the hospital to seek help until 2001.

Eventually I was told that I needed psychiatric treatment with the pain clinic as my symptoms and pain were all in my mind and even told to stop wasting the hospitals time. It was even mentioned that I was just trying to boost a whiplash claim even though I never made a claim.

I was left with a one-sided weakness/paralysis and using 2 crutches. My left hand clawed inwards and my GP told me I had arthritis. In 2005 my one sided paralysis was still present my GP said I had a stroke and prescribed me with clopedogrel. My symptoms remained the same.

In 2010 I had paralysis in all 4 limbs and confined to a wheelchair. I changed my GP. My both hands and feet were fully clawed. My new GP sent me to see a Rhuematologist as he thought I had severe arthritis too.

After viewing the 1998 MRI scan the Rheumatologist ordered an urgent MRI in May 2011. Although the scan reported that I had severe spinal cord compression ( advanced cervical myelopathy with myelomalacia at C3 to C6 ) I was not told until late October 2011. By then I had developed further complications with incontinence, breathing difficulties, leg jerking with severe muscle spasms.

In February 2012 I underwent cervical anterior decompression. My symptoms remain the same and I have not seen any improvement.

I requested my medical records and MRI scan from 1998 as I have always been told that there was nothing physically wrong with me.

I had a routine appointment with my neurosurgeon. At that appointment I thought I would test him and showed him an MRI scan and asked him "Did you operate on me because of this damage to my neck ?" He replied yes you can clearly see the spinal cord damage at C3 to C5. I said to him " But this is my 1998 MRI scan ! He replied Oh you are unlikely to recover as the damage has been there for too long.

I then decided to seek legal advice.

I am now awaiting further neck surgery and plastic surgery ( Tendon transfers ) on both hands too. I have had to pay tens of thousands of pounds to convert my garage into a disabled bedroom, thousands for carbon fibre leg braces and I do not have a life. There is good news out of all this - I am studying for a law degree and have gained 2 distinctions in my first exams. I scored the highest marks in the country. So its official now I am not brain dead yet lol !


I know an excellent neurosurgeon in Wales if anyone requires one. He is probably the best in the UK. I was totally amazed at his skill in surgery.


I realize this is an old thread, so not sure if Bendy is still around. I have a few very similar issues, Bendy, including an underlying diagnosis of Ehlers-Danlos. Lots of neck and back issues, in addition to certain muscles not working at all and more and more extreme difficulty walking. I've seen many doctors, had lots of therapies and haven't gotten very far. For a while, a lot of things were assumed to be EDS, but at this point, my worst symptoms--especially the isolated extreme muscle weakness, balance and coordination issues-- are definitely something else. I have to really consciously focus on using specific muscles with each step to walk and hold myself upright and straight. My pelvis twists if I don't think hard about engaging certain muscles as I move. They don't just kick in automatically, and they don't always work. Sometimes they work for a while and then just shut down. It wasn't like this all along...it came on very gradually over the past couple of years and looked quite differently even 6 months ago. Looking backward, I can see the progression, but two years ago, I would have described my symptoms very differently. I didn't think of it as weakness back then, but simply that my body was doing something strange. The EDS makes my body behave and respond differently than others, so it can be even harder to determine what is coming from where. The last couple of months, the weakness has really speeded up.

After a recent MRI, I was diagnosed with cervical myelopathy (along with a lot of other neck problems), which seems to tie together many of the issues in my hands and legs. The surgery may be brutal, but I am truly desperate for anything at this point. However, I've gotten additional opinions that seem to completely contradict the first one, and I don't want to be stupid about it. Other doctors don't seem to think it could be coming from my neck, but I am certain at least some of it is. They are running tests to see if anything else is going on, so hopefully we'll get to the bottom of it without going broke, if there is more to it. If Bendy is here, I am wondering how things turned out and what surgical decision s/he made. I'd also appreciate any input from others who have travelled that road. Thanks!