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  • Focal Myelomalacia

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    Old 10-27-2014, 10:05 PM   #1
    1986er
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    Focal Myelomalacia

    Hello All,

    My first post here ever. I need advice on my condition, as it seems the more I google or search it, the more concerned I get. Back in 1986 I had suffered a concussion and whiplash. Through out the years I have progressively gotten more pain, with more numbness and such, 1st MRI 2008 shows all disc's in my cervical spine herniated. Got a steroid injection for that. In 2012, one of my disc's slipped and I had an MRI that showed C4-5 spinal cord impingement down to 4mm. I had a disc removal with cadaver bone as well as a titanium plate. April 2014 I developed severe cervical pain. Had MRI, and I was told to see a neurosurgeon. She gave me one of 2 options. Have my neck completely fused or have a several level decompression. I had loads of spinal stenosis, myelopathy, and bone spurs, you name it. She highly recommended the spinal decompression, that although the recovery is extremely painful and long, I was too young (51) to have my neck completely fused. This past June I had the decompression done. Needless to say, she was not a good surgeon in the "follow up" department. 1 minute post op visit, never an xray or anything. About 2 months ago, my symptoms started coming back slowly, left arm pain, dropping things, knee buckling, and then in early this Sept a friend gave me a hug and I felt like I was being electrocuted, and dropped to my knees. I have been deteriorating more and more every day. My family Dr. ordered an MRI, which shows in my C5-6 area Focal Myelomalacia, or as my Dr called it progressive post traumatic myelomalacic myelopathy (mushy cord symdrome) I faxed these results to my neurosurgeon because of my concern that none of this showed up on my April (this springs) MRI. She called back, saying there is nothing she will surgically do to me and that I need to seek a pain control clinic. I understand I am in excruciating pain, but I have many more issues besides pain, like the fact that I touch my back of my neck (incision) and I get a shock wave going down my arms. That's just a part of my issues. My question is, could she have caused this during my surgery in June, and she is covering it up? Am I being paranoid? From what I am reading, Focal Myelomalacia is not a common diagnosis and never has is been said on my other 3 MRI's (She did a C3-7 Posterior decompression) Any help or advice of what my future may hold from any of you that have this diagnosis would be greatly appreciated. Thank you so much.

     
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    Old 10-28-2014, 12:30 PM   #2
    teteri66
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    Re: Focal Myelomalacia

    Welcome to the board.

    I am sorry you are having additional issues after your surgery.

    I would only be speculating if I tried to answer some of your questions pertaining to the surgery you had and whether things were handled appropriately. I would suggest you get another opinion from either a fellowship-trained orthopedic spine surgeon, or a neurosurgeon whose practice is limited to the back and neck.

    At the very least, I feel you were not followed long enough post surgery, especially considering one recommendation was to fuse most of your neck.

    Many surgeons will not do decompressions on so many adjacent segments as it often creates instability. When there is instability, there is a likelihood that one or more nerves will end up getting trapped or compressed....just what you were having the surgery to remedy! If there is instability created in part by the multi-level decompression, the associated discs and facet joints will continue to deteriorate and the nerves will remain compressed.

    If I were in your place, I would not return to that surgeon. I would have a consultation with both an ortho spine and a neuro surgeon to explore my options....I would look carefully at the surgeons' education and training and I would pay particular attention to their level of experience...and I would make sure they were not associated with your current surgeon.

    I would seek attention as quickly as possible as the longer the nerves are compressed, the greater the chance for permanent damage. Your spinal cord is probably not getting sufficient blood flow.

    Myelomalacia is not an unusual diagnosis...not common, but not rare either. Almost every spine surgeon should be able to treat you appropriately. But, I feel it is better to seek treatment soon.

    Good luck and let us know how you are doing.

     
    The Following User Says Thank You to teteri66 For This Useful Post:
    1986er (10-29-2014)
    Old 10-28-2014, 08:24 PM   #3
    1986er
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    Re: Focal Myelomalacia

    I truly appreciate you responding to my post. I can always sit here and wonder "what if" and am I over reacting. But getting the validation you gave me, gives me great comfort knowing that I need to follow my gut and obtain more opinions, and especially do my homework on who will touch my cervical spine. I so regret having her be so flippant on her approach to her suggestions of 2 surgeries. I just trusted her and assumed, yet all the while I was being prepped for surgery, I was being reassured by the hospital staff that I had the "best of the best" Now I am seriously wondering what "best" they were talking about, as I now sit here with a seriously unstable spine. Again, thank you. I know I will be on the phone tomorrow doing my homework this time looking for proof of credentials and experience.

     
    Old 10-29-2014, 06:35 AM   #4
    teteri66
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    Re: Focal Myelomalacia

    I see you are in Minnesota. There are many good surgeons in the Twin Cities and at the Mayo Clinic, although I would stress that a specialist does not have to have a "big name or reputation" to be an excellent surgeon. The ones with the big reputations also have layers of people surrounding them, and the patient may only meet the surgeon briefly before the operating room, letting the physician's assistant do most of the diagnostic work and patient contact.

    We are lucky in that we can find so much information online these days, including brief cvs showing where they went to school and did their training, whether they had a spine fellowship, whether there have been any lawsuits, etc.

    I was a bit excessive but I think I saw 8 spine surgeons over a two year period before I finally decided to have surgery! Mine was lumbar so there wasn't the sense of urgency that there sometimes is higher up in the spine.

     
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