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cervical myelopathy stenosis..... I need to talk to someone please....

michelle63mmichelle63 Posts: 2
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical
hi i have had cervical myelopathy stenosis for 5 yrs now... And to be honest i am just now finding out that there is really not much you can do for it.... I always keep saying i'll get better... This has been pretty hard and the pain is aweful... Also the numbness. Burning is unreal... Can some one please talk to me about this..... Thanks


  • I understand exactly where you are coming from! How have you been managing your pain thus far? Are you on medication? My stenosis only became apparent 1 year before I had my surgery and at 1 yr post-op I am still struggling with pain.

    Have you had surgery so that it doesn't get worse? You need to find a way to manage your pain. Have you seen a pain management doctor or a physiatrist? Have you tried physical therapy or other conservative treatments?

    There are plenty of people on this forum with similar issues, so welcome and keep us posted on your condition!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • michelle63 said:
    hi i have had cervical myelopathy stenosis for 5 yrs now... And to be honest i am just now finding out that there is really not much you can do for it.... I always keep saying i'll get better... This has been pretty hard and the pain is aweful... Also the numbness. Burning is unreal... Can some one please talk to me about this..... Thanks

    what is occurring for you and for 5 yrs. I am in a position of just experiencing myelopathy and after two years of assessments with complex neck conditions and the primary problem being nerve roots being compressed multiple levels C-5 down into T-1 area. I will not be doing surgery 3 surgeons assessed 12 hr. posterior and anterior approaches rods & screws in poster 4 levels and plates screws anterior 3 levels approach. 2 out of the 3 surgeons did not address high risk in relation to prognosis of C-Spine T-Spine bridging involved and resolving nerve damage progression left arm/hand and now with recent mva (deliver truck hitting me right rearside of minivan) I am now losing right arm/hand and moved into myelopathy symptoms past 3 months.

    My nerve pain is managed well in shoulders, scapular, forearm and hand with neurontin (generic gabapentin) taken 3X day my myelopathy is aching and more weakness than pain in calves of legs and aching joints ankles, knees.

    Hope you can get on board with a good Pain Management specialist. I found a good one at a large Univ. medical center and specialized with spine and pain issues.

    What has occurred for you with your myelopathy and activity lately. How are you managing treatment for pain now?

  • Michelle,

    First let me say welcome if I haven't already. As far as your myelopathy, have you had surgery and how long ago was it? What type of medications are you currently taking? I am not sure if they told you once you developed myelopathy, surgery is done to stop the progression but won't undo the damage that has been done. What are your current symptoms? What kind of doctor do you have treating you at the time?

    One thing you need to learn to do is plan your time for rest, to help with symptoms. Such as if you know it comes on every two hours and then it gets more progressive take rest breaks at the two hour time frame. Also be sure that your computer is set so your not looking down at it, but rather looking straight out. You want to do things close to your body, not away. Avoid holding one position for long periods of time. If your having issues with falling and balancing, be sure to always use a cane, to avoid other issues, such as broken bones, scrapes and so forth.

    There are few threads dealing with it in the forum conditions not covered by other topics, which might have some more hints. But one thing for sure is you have found other dealing with the same issues, and the condition. There is also some expert written articles on the topic that might be helpful.

  • Have you had surgery for your cervical myelopathy?
    I have been told that I have cervical myelopathy and will need surgery to stop the progression. I was warned that I may not get any improvement in my symptoms. This made me feel that I should have surgery sooner rather than later to stop the progression of my symptoms before they get worse.

    Before I schedule surgery, I have been referred to a neurologist to make sure that I don't also have MS or some other neurological conditions.

    I think once you have signs of myelopathy, it is very unlikely to get better, but will tend to get worse, either slowly or more quickly.

  • Hey Michelle

    Is your stenosis canal or foraminal? I can relate to the pain. I have bilateral stenosis and it creates havoc in neck should arms and hands. I am debating acdf and levels c4-c7. I agree there isnt much you can do, manage with pain meds or maybee injections. I have learned if you go to neuro the want to operate. My neuro cant wait to get in there. Anyway God bless and good luck.

  • Michelle, Hi. I have had three surgeries, had a great doctor but after I was rear ended I have been in extreme pain, I have gone to PT 2x a week and I recieve steroid injections, I have a home tens unit and take muscle relaxers and pain meds. this has been going on for 9 months, they won't operate on me any more. I can tell you that cold makes it worse, and for some reason stress or over using your arms or neck causes muscles to tighten and that makes it worse. I wish I could tell you something positive about this but everyone is different and responds different. the meds and heat work best for me.

  • Hi to all; My name is Toy and as I read your posts, it is easy to tell everyone here knows what they are talking about and I can relate to all. In Dec.9th 2010 I under went a c3-7 posterior laminectomy and fusion with instrumentation.My condition was DDD stenosis with myelopathy,and kyphosis. I had 5 severe spinal cord compressions. I guess what I want to say is Stenosis is a sinister progressive disease, by the time I noticed and recognized my symptoms it was to late the damage was already done. Now in my case the disease was two fold meaning that it was partly genetic and worsened by life choices such as work, posture,athletic activities and other physical trauma to my body by being young and just unaware. So my opinion is if you have verifiable proof that you have myelopathy it will never improve it just progresses so the sooner you deal with it the better your outcome. And with newer technology it is easier to make choices that are right for you but do the research and talk to your Dr. I went with my second choice and it saved me a second surgery and a lot of trauma.I had a good outcome but life is not a bowl of daises but that's another story. good luck to you all Toy
  • I had myelopathy too and 5 months post op I still have problems. When I saw my surgeon in May he said to give it at least 6 months and if the problems don't go away then they are there forever.
    I can live with it though. At least I'm not going to get any worse.

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