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Myelomalacia

Has anyone ever had this spinal cord condition? 
And has itrogressed and got worse.
it is starting to get worse for me.
please post or reply to me  
I need some direction to go forwArd
thanks 

  God. Bless
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Comments

  • MikethepikeMMikethepike MIchiganPosts: 492
    This is a posting from a while back, since this posting. I have got worse,...
    muscle spasms and tightness, nerve pain worse, muscle atrophy, can't sit very long  and now
    standing very long is hard.  Hard breathing when sitting.  The myelomalacia 
    is in my. C 2 area.    If anyone has this please respond.  Dr. Don't like to tell you.
    they just say don't worry about it.
       Hey. Take. Care.         God. Bless 
  • I had this and am 15 weeks post op for c3 to c7 fusion.

    Three different surgeons said I needed surgery and that the condition would only get worse.

    The big problem is that with spinal cord injury they say that once there is damage it does not recover.

    I hated the idea of surgery but hated the alternatives even more.
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  • MikethepikeMMikethepike MIchiganPosts: 492
    So. Arnold you have myelomalacia?  Where is it, 
    mine is in the C. 2 area. I would love to find a specialist on it.
    Id like to find the reason it progresses.
    So if anyone knows send me a personal message
    take care.     God.  Bless


  • MikethepikeMMikethepike MIchiganPosts: 492

    Hi everyone, I figured I'd bring this up again, Just wondering if anyone new on here  has it,

      My muscle tightness is getting worse especially in the back, chest, and diaphragm area. 

     I have been taking Clonopin and Zanaflex, doesn't really seem to do much. Please  respond 

     Just looking for new ideas. Physical therapy doesn't seem to help much. 

     Take care and God bless everyone that has pain.

  • MikethepikeMMikethepike MIchiganPosts: 492

    Just wondering anyone else out there with myelomalacia? 

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  • MikethepikeMMikethepike MIchiganPosts: 492

    I  really feel that people have it but the doctors won't bring it up. I found out by reading the  MRI report. 

     The first time I question the doctor he said don't worry about it ,  Think of it as a small scar.

     I have it in the cervical area, at C. 2. Take care and God bless

  • I do -- at C5-6-7. I'm getting multiple opinions from spine doctors because the first one thinks I need surgery ASAP. Meanwhile, the damage appears to neurologists as a multiple sclerosis plaque/lesion.

  • MikethepikeMMikethepike MIchiganPosts: 492

    I am not a doctor but my opinion   Would be to have a  neurosurgeon  recommendation and have an operation to stop compression on the spinal cord   Can I ask what symptoms do you have such as , spasticity, hard breathing,  tingling numbness in hands and feet. Keep a close eye on it. Take care and God bless

  • I'm waiting on the surgery--I definitely do not want surgery! A second opinion with an orthopedic spine surgeon was that I do not need surgery and that the spot on my MRI does not look like myelomalacia, but he seemed like an uninterested putz. Anyway, I will be seeking a 3rd and 4th opinion with neurosurgeons (instead of orthopedists) because what appears as myelomalacia may be from multiple sclerosis. Sigh.

  • Symptoms are tingling in my hands and arms, pain in my neck/back and MAJOR stiffness in my neck, shoulders and upper back. I had other weird symptoms for 10 days a few months ago (feelings of heat on my skin on one side of my body; right legs was numb/tingling/weak, very sensitive to touch). The Neuro team in the hospital at the time thought it was MS and did a spinal tap, which was positive for MS. However, I've been reading that the spinal tap could be positive due to damage on spinal cord (myelomalacia). I have an appt with a top MS specialist in February, and I'm hoping he can shed some light.

  • MikethepikeMMikethepike MIchiganPosts: 492

     Hi Jodes,  One question do you have compression something pushing on the spinal cord in that area. I am not a doctor 

     But if there is compression, something pushing on the spinal cord, I myself would have the operation. 

     Take care God bless and merry Christmas and happy new year 

  • MikethepikeMMikethepike MIchiganPosts: 492

    Myelomalacia can progress, they can form lesions like. M S  does.  Mine has been progressing . Having it at the. C 2 area  makes it a complicated problem. I am willing to try anything to make it better. Has anyone found a place that specializes  in myelomalacia.?

  • MikethepikeMMikethepike MIchiganPosts: 492

     Would love to find a doctor that specializes in  myelomalacia.  I've searched all over and can't find one. If anyone knows of a place that specializes in it please personal message me. Take care God bless

  • MikethepikeMMikethepike MIchiganPosts: 492

     I am getting pretty bad, I can still walk, zero energy. I wish there was someone    That has cervical  myelomalacia . It's getting to the point that walking showering is getting very hard to do . My body feels so heavy. I am supposed to   Have a CAT scan with dye.

     But insurance is holding it up. I wish I could find someone that has similar problems to what I have  . Take care and God bless

  • MikethepikeMMikethepike MIchiganPosts: 492

    I’ve posted about this condition over the last couple Years, it’s getting much Worse It’s getting to the point I can’t take much more. I have  more spasticity  and more pain. I’m hunched over more just wondering if anyone else has this condition? Mine is in the C2 area. 

  • MikethepikeMMikethepike MIchiganPosts: 492

    Hey ARNOLDB ,  just wondering how you are doing with your Myelomalacia ? Mine has progressed,  I can still walk, but get tired very easily. Drop us a note and let us know how you were doing 

  • MikethepikeMMikethepike MIchiganPosts: 492

    Myelomalacia does progress, mine has but there is no changes in my mri. Such as muscle spasticity,  I have so much of it today basically it’s the stiffness in the muscles, trying to exercise seems to make it worse. I’ve been to  inpatient physical  therapy for 2 to 3 weeks at a time. All I get from it is body Heaviness.  Does anyone have this condition, please respond if you do. Let me know what area it is in. Mine is in the   C1. C2 Area. Take care and God bless.

  • MikethepikeMMikethepike MIchiganPosts: 492
    This was a old posting , I was wondering if anyone has Myelomalacia, mine is in the C .1 . C .2 . area. I’d appreciate it if anyone has it please comment on it. Take care and God bless.
  • lindicollindico Posts: 1
    edited 10/05/2019 - 2:15 AM

    Mikethepike: Yes I have myelomalacia at C4. I’m trying to find info but like you having little luck. What I have found is frightening and hopeless. I do not have ongoing compression. My cord had been flattened during a four-month period and during that time was hemorrhaging and being brutally battered and bruised. I had decompression surgery with fusion and rods C2-T2. I regained use my arms and legs but was never told my cord might not come back. I had no idea it was dying until a recent  MRI showed myelomalacia. I went for the MRI because the already terrible pain I had since surgery worsened and my arms were tingling and fingers numb. Can’t get in with neurosurgeon for over a month and I think it’s already progressing because now one of my hands is numb not just a few fingers.  Good luck. I’m feeling pretty hopeless at this point. 

  • MikethepikeMMikethepike MIchiganPosts: 492

    Hi Lin.,

    It’s very hard to find a doctor that really wants to talk about it. I don’t know why that is. I think that everything about it is they can’t do anything except stop the compression on the spinal cord. If this just happened to you my suggestion is to try to stay as active as possible, my Myelomalacia is at C 1   C 2   .   Does your school from C-4 to T1.? Not the fusing but th e actual Myelomalacia.? What area of the country are you in ?  ,I am in Michigan Well anyway check this for him every day And you’ll meet a lot of helpful people. Take care and God bless

  • MikethepikeMMikethepike MIchiganPosts: 492

    I figured I’d run this through again just wondering if anyone has  Myelomalacia. And how it’s affecting you, it’s gradually gotten worse for me over the last five years. Take care and God bless

  • MikethepikeMMikethepike MIchiganPosts: 492

    Just wondering if anyone had any more comments or I should say new comments about myelomalacia, it’s been six years trying to deal with it and it’s slowly it’s been taking more and more of my life away , it’s been gradually slowing me down, I keep trying to push forward and stay as active as I can but it is very hard. Well take care and God bless everyone That has MYELOMLACIA 

  • Hi Mike,

    Yes i had myelomlacia as one of my many problems at C5/C6 also had sever ddd, severe stenosis, reversal cervical lardosis, deformed spinal cord and forminal stenosis. Surgeon gave me an option to either watch it or take care of it. He was also honest about the chance for worsening and irreversable nerve damage and or  paralysis. I opted for surgery Dec 2019 as the though of paralysis is frightening which made the whole surgery frightening a bit.  So not sure what was the biggest problem for the surgeon but he stated the spinal cord had been compressed for a long time.

  • MikethepikeMMikethepike MIchiganPosts: 492

    Hi. D .

    What kind of problems are you having now, what is affecting you daily. As I mentioned it’s gradually over six years cause so many problems take care and God bless

  • Hi Mike,

    Sorrry for the delayed response. Im still having lingering pain from the surgery but getting better now that physio has opened back up. Started bad in 2016 prior to surgery I had a very stiff neck which made it hard to look up/down and side to side. I also had burning in my shoulder and arm and horrible abdominal pain with bowel issues I also had horrible neck pain for years but that subsided. I went for many tests for the stomach problems and was told was irritable bowel. Seen the neurosurgeon Nov 2019 said he could do ACDF at C5/C6 as my cord had been compressed a long time. Look up SEA (Snake eye Imaging) in MRI.  So my option was to wait and see or have the surgery. Asked concerns if i waited and was told possible long term nerve damage, paralysis, also was told a heavy impact would be very bad for my health. In my job I can't take those chances so I opted for surgery. At the time I had no idea I had myelomylacia until i got my MRI'S and read the reports.  Both my 2016 and 2019 MRI'S stated myelomylacia. My neck stiffness is getting better, doesn't hurt to look, shoulder burning very mild and less often now.  Have you had ny luck any updates on how you are doing?

  • I should add since surgery all my stomach and bowel issues have resolved.....

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