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    Old 03-05-2015, 05:33 PM   #1
    doglover3
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    Cervical myelopathy recovery

    I was diagnosed with cervical myelopathy in Sept. of last year. Ten days later, had a 2 level ACDF C3-5. Symptoms prior to surgery were difficulty walking, balance issues, numbness in hands and feet and bladder retention. Bladder retention was resolved immediately post-op but the rest of my symptoms are still with me. I do walk a little faster and do not have to hold onto things as much but I still have spasticity in my legs and overall muscle weakness. I have done a lot of research on this disorder and don't find a lot of happy endings. My Dr. will not give me percentages but just says it will take up to a year (I'm at 5 mos.) to see what improves. Has anyone with myelopathy had good or great improvement after surgery?

     
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    Old 03-05-2015, 09:31 PM   #2
    ChuckStr
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    Re: Cervical myelopathy recovery

    I do very likely have slight myelopathy but haven't had surgery yet (and hopefully will never have to). I've done a ton of research and there is some cause for hope. The old adage was that 1/3 improved, 1/3 stayed the same and 1/3 got worse, but that has been shown to be overly pessimistic in several studies. You had some significant issues prior to surgery which unfortunately does tend to lead to outcomes that aren't quite as good but in some studies as many as 75% had good or excellent outcomes (partial or full recovery from symptoms). In general, weakness was the last thing to subside and took several months or more in many of the cases where it resolved. There are people that have gotten improvements after more than a year as well. I think there is hope that at least some of that weakness will resolve especially since you've had resolution of some other symptoms.

    Good luck and let us know how you get on...

     
    Old 03-06-2015, 06:09 AM   #3
    doglover3
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    Re: Cervical myelopathy recovery

    Thanks so much for the response. I have found some encouraging studies also. I also check out a lot of the forums online but I think that the people who recover probably don't post much afterwards. Most of what I hear is negative comments. You seem to be very informed on CM. Have you had any imaging to diagnose or r/o a compression?

     
    Old 03-06-2015, 12:29 PM   #4
    ChuckStr
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    Re: Cervical myelopathy recovery

    Yes, I've had a series of MRIs. There is a fair bit of disagreement from the 5 surgeons and 3 neuros I've seen as to the significance of the compression I have (if indeed there is some). It's definitely a borderline kind of thing. My spinal canal AP diameter is narrowed to 9mm at c5/c6, and 10mm at C4/C5 which isn't too bad and not much changed from the study 7 years ago. On axial images, however, at C5/C6 a little below where the saggital is clearest there is definitely no CSF around my cord and it's arguably "pushed in" a little which wasn't the case 7 years ago. The last radiologist even said she saw signs of myelomalacia at that level in both my 7 years ago scan and the current one but I've had several others look at it and noone else thinks it signifies myelomalacia.

    So, if you throw out the neuros who basically said don't ever do surgery unless you absolutely have to, and the one neurosurgeon who said do surgery right away, the concensus was to wait and see how things developed. So, I do PT exercises for my neck and posture and I go in roughly every 4-6 months to get checked out to make sure there are no new signs of myelopathy. So far that has been working out ok over the last year.

    I have tingling in my hands and feet and some heaviness in my legs as well as muscle twitches primarily in my calves. There is also some significant encroachment on the cervical nerves and I've had 2 bouts of radiculopathy one on the left, the other on the right. That's all been pretty stable over the year so I just keep on plugging away. I'm trying to lose some weight so if I do need to have the surgery I'll have a better chance at a good outcome and recovery.

    I think you are correct that most of the folks who have good outcomes disappear from the board and the majority of those left are the ones who have issues. I think these boards are great for support and information but using them as a guide to outcomes is probably not very useful.

    As far as knowing about CM etc., I think that knowing a lot about the disease processes affecting you, their treatments and diagnostics allows you to have more productive discussions with your caregivers, and especially to ask intelligent questions. I've found not all of them appreciate this but those are the folks I don't go back to.

    How long did you have symptoms prior to your diagnosis? Did they tell you the degree of compression when you were diagnosed? I've read, and was told by a couple of surgeons that "significant" symptoms usually don't manifest before there is about 30% compression of the cord. Urinary retention must have been pretty scary.

    Take care...

    Last edited by ChuckStr; 03-06-2015 at 12:31 PM.

     
    Old 03-06-2015, 01:06 PM   #5
    doglover3
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    Re: Cervical myelopathy recovery

    The first symptom I had was with my gait. I have been an avid walker for most of my life and all of a sudden, my legs would not do what I wanted them to. Walking uphill, it seemed like my legs weren't even connected as they wouldn't go faster when I wanted them to. That was about a year ago but in retrospect, I think I had some issues with my hands (clumsiness) for a yr. or two. Most of my symptoms appeared in a 4 month period. I went downhill fast. Unfortunately, during that time I was in Colorado in a small town and didn't have access to the right kind of Drs. I saw 3 Drs. out there and none of them had a clue. Thank God, I went back home (to Missouri) and got diagnosed within 3 days. So I actually had surgery about 6 mos. after my walking issues started. I know the prognosis is better if you decompress within 12 mos. of the symptoms but I don't know if I'd qualify due to the hand clumsiness.

    The only measurement on my MRI said, " the anteroposterior dimension of the canal is 7mm. You could definitely see the compression on my MRI. I'd say it was moderate as I've seen better and worse.

    I've actually had some of my numbness (esp. my feet) get worse lately so my NS wants me to see a neurologist. I get the feeling that most surgeons only want to do the surgery and deal only with related problems. So, I guess getting a neurologist is a good thing.

    Do you ever notice that your numbness and tingling gets worse when your activity increases? When I'm laying down at night, the numbness is so much better. When I overdo, I really pay for it. I'm trying to do exercises for the spasticity in my legs but hasn't helped yet. I really don't want to take any meds if I can avoid it. Is the spasticity in your legs constant?

     
    Old 03-06-2015, 03:38 PM   #6
    ChuckStr
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    Re: Cervical myelopathy recovery

    Yeah, 7mm is fairly tight. I doubt that compressed your spinal cord 30% though and I'd agree that probably makes it moderate. The cord itself is between 7.5 and 8.2 or so at C5/C6 it varies a little along the length. As I expected though, the "moderateness" of the compression didn't keep you from developing significant symptoms.

    I've had several friends and relatives have spine surgery of various types and from their experience it does seem like the surgeon doesn't want to deal with anything other than the surgery honestly. Even standard follow up seems sort of like a necessary evil for the practice. I hope that you do get some answers and relief from the neurologist.

    Yes, the numbness and tingling gets worse with significant activity although not really that bad ever. I also have muscle fatigue/aching/burning across my neck and upper back whenever I exert myself too much. I wouldn't say I have spasticity in my legs more of a heavy feeling like walking through sand. I don't notice it unless I'm walking although I do get a sort of restless feeling when I have them propped up.

    I don't blame you for not wanting to take meds. Lots of unwanted side effects ...

    BTW: I think that makes you from Ballwin MO. I have a friend there who is a sign language interpreter and another friend in the process of moving there. I've heard a lot of good things recently about Ballwin

     
    Old 03-07-2015, 06:58 AM   #7
    doglover3
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    Re: Cervical myelopathy recovery

    Yes, I hope to get some answers from the neurologist in April. It will be interesting to see if I get any different opinions. Will let you know what he says. Thanks for listening!

     
    Old 03-11-2015, 05:56 PM   #8
    girl808
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    Re: Cervical myelopathy recovery

    Quote:
    Originally Posted by doglover3 View Post
    Thanks so much for the response. I have found some encouraging studies also. I also check out a lot of the forums online but I think that the people who recover probably don't post much afterwards. Most of what I hear is negative comments. You seem to be very informed on CM. Have you had any imaging to diagnose or r/o a compression?
    Hi! I had surgery in 2012 and also had myelopathy. In my case I had 2 levels that needed to be fixed-one was at 5 mm and the other at 6.6 mm.

    My problems were progressive-they said the surgery would mainly stop it from getting worse. My left arm was really affected sensory and strength wise. I still am not up to par with what I should be. The arm is numb and the strength just never got back to what it was before the surgery. I can really tell that when I try to use a nail clipper with that hand, lol.

    I do consider my surgery a success. My surgeon and his PA were upfront and honest from the start. They didn't promise a total cure all and I had no illusions about being miraculously cured of all the problems which I think a lot of spine surgery patients are told. It did make the horrible pain go away and stopped it from getting worse which is what he said would happen and I was told I might never get all my strength back in my arm.

    And you are so right about the numbness and tingling getting worse when you over do it. I also have a problem with my neck "catching" sometimes. The mobility isn't like it used to be, lol. But all in all I am quite happy with the results.

    Good luck.

     
    Old 03-12-2015, 06:01 AM   #9
    doglover3
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    Re: Cervical myelopathy recovery

    Thanks for the response girl808. Did you have any gait problems? I have arm and leg weakness but the legs are the worst. Never had much pain, just a stiff neck prior. Did you have any other symptoms? I became very cold-natured overnight and still am.

     
    Old 03-19-2015, 10:22 AM   #10
    mario5
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    Re: Cervical myelopathy recovery

    Hi there,

    Cervical disc replacement C4-5-6 myelopathy and radiculopathy

    I started noticing weakness in right leg January of 2014. Started doing studies in December. Surgery was performed in late January of 2015. Opted for the double disc replacement instead of the ACDF because luckily I had saved up some money and was able to afford it.

    Symptoms 8 weeks post surgery:

    1. Weak right leg (better now)
    2. Shaky legs (got worse)
    3. Shaky arms (same)
    4. Pain in right arm (come and goes)
    5. Bladder control (problem almost gone)
    6. Shaky lips (same)
    7. Hyperreflexia (same)

    I've consulted with neurosurgeons, orthopedics, neurologists, and more. Most wouldn't give me a time frame or statistics. Some said that if I don't get better after a year, I will most probably stay this way.

    From what I've read, recovery rate is higher in younger patients. Healthy lifestyle also play an important role in recovery. However, I've also read that most patients recover to a certain degree regardless of age, but never 100%. A small percentage gets worse. Usually, patients' biggest noticeable improvement is within 3-6 months post surgery. 18 months after surgery and the chances of getting any better is very slim.

    The only thing we can do is be optimistic. Outcome could have been worse so we have to appreciate what we have.

    Take care!

     
    Old 04-20-2015, 06:02 PM   #11
    Scelte
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    Re: Cervical myelopathy recovery

    Hello - thank you for your post. Quick question - as your case sounds similar to mine (DDD C4 - C7; three herniations and apparently mild:moderate cord compression). Mri doesn't mention compression; Emg Neuro said fibromyalgia and pt thought radiculopathy and neurosurgeon (an expert I've seen mentioned on sight; well respected) said anterior for compression or posterior if want to clean up the rest. Yet - can't 100% call it CSM. I have most of symptoms you mentioned however leg and arm have diminished reflexes.
    He said not to wait until too late and basically sent me on my way. Now I'm a nervous wreck about tripping or even sitting wrong. Not 50 yet - fear future.

    Thanks for reading

     
    Old 04-21-2015, 06:03 AM   #12
    doglover3
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    Re: Cervical myelopathy recovery

    Quote:
    Originally Posted by Scelte View Post
    Hello - thank you for your post. Quick question - as your case sounds similar to mine (DDD C4 - C7; three herniations and apparently mild:moderate cord compression). Mri doesn't mention compression; Emg Neuro said fibromyalgia and pt thought radiculopathy and neurosurgeon (an expert I've seen mentioned on sight; well respected) said anterior for compression or posterior if want to clean up the rest. Yet - can't 100% call it CSM. I have most of symptoms you mentioned however leg and arm have diminished reflexes.
    He said not to wait until too late and basically sent me on my way. Now I'm a nervous wreck about tripping or even sitting wrong. Not 50 yet - fear future.

    Thanks for reading
    Scelte, I'm not an expert but have done a lot of research. One thing that caught my attn. was you said you had diminished reflexes. With cervical myelopathy, you have increased reflexes (hyperreflexia). This is from damage to the upper motor neurons. With Lower motor neuron damage, you can have hypo relexexes (diminished). You might want to ask the Dr. about this.

     
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