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  • How Quickly Does Myelomalacia Progress?

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    Old 01-20-2016, 05:08 PM   #1
    ransomedbyfire
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    How Quickly Does Myelomalacia Progress?

    My husband started having numbness and tingling in his hands around the end of October 2014. His symptoms have progressed over time. Now, he has numbness pretty much all over his body except his face and has trouble using the bathroom. He can still walk, play video games, drive, and type with some effort.

    He's had a few nerve conduction studies and EMGs that have all showed up pretty normal except for one that was done on his legs about 6 months ago that showed neuropathy.

    He had an MRI two days ago that mentions "developing myelomalacia" in his cervical spine. He's scheduled for surgery on February 25th. How much can myelomalacia progress in 5 weeks time? Should we be trying to demand surgery earlier than this?

     
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    Old 01-25-2016, 10:22 AM   #2
    teteri66
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    Re: How Quickly Does Myelomalacia Progress?

    Welcome to the board. It is unfortunate your husband did not have surgery sooner. Did he not have MRIs done back when they did nerve conduction studies? Damage to the spinal cord should be fairly easy to spot on MRI.

    Unless his case is very unusual, I think waiting five weeks won't be a problem.

    Did you get more than one opinion regarding the surgery?

     
    Old 01-27-2016, 06:00 PM   #3
    ransomedbyfire
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    Re: How Quickly Does Myelomalacia Progress?

    Since the onset of his symptoms in 2014, he's only had an MRI of his thoracic spine (about 6 months ago), and an MRI of his cervical spine and his brain, about a week ago.

    We haven't gotten a second opinion. But the neurologist that ordered the MRI and the surgeon who's going to do the surgery seem to agree on what needs to be done. And we're just trying to get rid of these terrible symptoms. We're kind of desperate here.

     
    Old 01-28-2016, 09:16 AM   #4
    teteri66
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    Re: How Quickly Does Myelomalacia Progress?

    And you have examined your options and feel this surgeon is the most qualified, well-trained spine surgeon available to you? I cannot over-emphasize how important the selection of the spine surgeon is to the successful outcome of the procedure.

    This is a very delicate surgery your husband is facing and I know you want what is best for him! There is lots of good information online about myelomalacia. I would suggest you learn as much as you can so you understand what your husband is dealing with. Sometimes the urge to lessen pain leads us to make hurried decisions.

     
    Old 01-28-2016, 05:19 PM   #5
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    Re: How Quickly Does Myelomalacia Progress?

    There are two surgeons in our town that do this procedure and have very good reputations. One is a neurosurgeon who's operated on me and my mother-in-law. The other surgeon, specializes in the spine and has operated on my husband twice before (lumbar microdiscectomy and ACDF). He also has a very good reputation. Right now, I feel our only three options are 1) surgery with the spine surgeon 2) surgery with the neurosurgeon or 3) letting the condition run its course.

    I've read some very scary things about myelomalacia online, and his symptoms are scary already. I have no idea what we'd do if they got worse or never lessened at all. It's been quite debilitating for him.

     
    Old 01-29-2016, 06:34 AM   #6
    teteri66
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    Re: How Quickly Does Myelomalacia Progress?

    You are correct. Doing nothing is not an option. You do want to get the pressure on the spinal cord relieved as soon as possible. I am happy you have experience with your "options."

    Sometimes people have no idea who to consult with and just sign on the dotted line with the first recommendation they get from a family doctor or PCP, without giving any additional thought to the surgeon's education, training and experience. Happily, this is not the case with you.

    Have you tried calling the surgeon's office to see if you could move up the timing of the surgery? Although waiting a few more weeks probably won't make much difference....myelomalacia does not automatically indicate surgery is required ASAP. It just depends on how advanced it is. Somethings a spine surgeon will "watch" the condition for any change...and surgery ends up never being required because the situation stabilizes.

    I don't know how long ago your husband had the ACDF but if myelomalacia was a factor then, I'm sure it would have been mentioned.

     
    Old 01-29-2016, 03:27 PM   #7
    ransomedbyfire
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    Re: How Quickly Does Myelomalacia Progress?

    His last ACDF was in 2012, and myelomalatia was not mentioned. His symptoms resolved almost completely with that neck surgery (or as much as they can when you have metal in your neck). The surgeon even got compliments on his work from a local medical university because of how much mobility my husband still had in his neck a few months after the surgery. (He'd gone to the university for sinus surgery.)

    Oddly enough, if I've read it correctly, I think the MRI report suggests the myelomalatia may have been caused by the previous ACDF. I've heard they're kind of like potato chips. Most people can't have just one.

     
    Old 11-07-2016, 07:53 AM   #8
    Katrob56
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    Re: How Quickly Does Myelomalacia Progress?

    Did anyone ever answer to how quickly does decompression progress?

     
    Old 04-07-2017, 01:10 PM   #9
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    Re: How Quickly Does Myelomalacia Progress?

    Quote:
    Originally Posted by Katrob56 View Post
    Did anyone ever answer to how quickly does decompression progress?
    No one ever did say how fast it progresses. I am interested also. I was diagnosed with Myelomalacia in 2016. After an ACDF in 2015 for a spur on the spine and ruptured disc my symptoms returned 2 weeks after the surgery. My neurosurgeon was tearful after I finally convinced my PCP to order an MRI. It revealed Myelomalacia and acute cord atrophy. The surgeon referred me to a Neurosurgeon at Duke University because he said that he only knew very little about Myelomalacia. Going back over my previous MRI s I saw where the myelogram that was ordered before the 2015 surgery showed Myelomalacia. Fast forward to present. I am 4 months post operative posterior laminectomy with multi fusion from C4-c7. The terrible burning pain and numbness returned to my hands after 2 months. Now my right leg has a pain going down it. Arms are weaker than ever. Neurosurgeon says give it 12- 18 months and the nerves may settle down. So so tired of this pain. Wish someone could tell us how fast it progresses

    Last edited by Katrob56; 04-07-2017 at 01:11 PM.

     
    Old 04-11-2017, 07:29 AM   #10
    teteri66
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    Re: How Quickly Does Myelomalacia Progress?

    I'm sorry you are still in pain and that the symptoms have not been resolved. I think there aren't any satisfactory answers to your question because without a crystal ball, a doctor cannot tell you, or anyone else with the disease, how quickly it progresses. As I understand it, and I am far from an expert on the topic, some myelomalacia will not progress once surgery is done. The damage already caused, however, cannot be reversed.

    It may be that your recent surgery has stopped the progress of the disease but that you may have some residual damage. You might want to make an appointment with the surgeon and go in to ask him all these questions. I can see why you don't want to wait 12-18 months and then find out there was nerve compression that could have been decompressed.

     
    Old 04-11-2017, 06:22 PM   #11
    Katrob56
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    Re: How Quickly Does Myelomalacia Progress?

    Quote:
    Originally Posted by teteri66 View Post
    I'm sorry you are still in pain and that the symptoms have not been resolved. I think there aren't any satisfactory answers to your question because without a crystal ball, a doctor cannot tell you, or anyone else with the disease, how quickly it progresses. As I understand it, and I am far from an expert on the topic, some myelomalacia will not progress once surgery is done. The damage already caused, however, cannot be reversed.

    It may be that your recent surgery has stopped the progress of the disease but that you may have some residual damage. You might want to make an appointment with the surgeon and go in to ask him all these questions. I can see why you don't want to wait 12-18 months and then find out there was nerve compression that could have been decompressed.

     
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