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Myelomalacia: Let's connect
I recently had a MRI of my cervical spine and moderate to severe myelomalacia was discovered. I already have a C3 to C5 fusion. Symptoms include pain in arms, neck and shoulders, off balance, light headed, difficulty picking up small items. Has anyone else experienced this diagnosis? What has been done about it? Seeing a neurosurgeon soon but not excited about another neck surgery. However what I read about it says if left untreated could cause serious nerve issues. Any help would be greatly appreciated.
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I think a wait and see approach when dealing with something as serious as myelomalacia is much too casual. It is an extremely dangerous condition and can cause paralysis and death. I have the condition and my arms and hands are atrophied due to irreversible nerve damage that the condition has caused. In my case the condition is very progressive and has ruined my health. Once the damage is done, that's it. I think the doctor who suggests surgery ASAP is trying to help you. Neurosurgeon's are not surgery happy because spinal procedures are very serious. I would have the surgery's as quickly as possible because if it progresses too far you will have no options. I wish you the very best.
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1 ReactionWhen will I die?
When will I die?
1 day?
1 week?
1 month?
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1 Reaction@rasmus07, that's a serious, yet impossible question for fellow patients and members of the forum to answer. Have you discussed a timeline and prognosis with your medical team to help you prepare? Have you looked into hospice options?
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4 ReactionsYes! I had c 4-7 fused in 2016 or 17, myelomacia with a spontaneous spinal cord bleed , the repair was anterior. Last April my c 2-5 went and was fused dorsally . I have much permanent damage, numbness and sensation problems, gait issues and severe pain, random spasms in my left hand and arm and thighs and lower legs.. but my whole back is a mess of spasms, tight muscles , pain.
I see a pain management doctor now , actually I only started seeing the doctor after I proved the myelomalacia and had the second fusion( I bought a house after my scare of death 1500 miles away from my home state , where the cold isn't part of what is causing me extra pain)
For a yr that I was deteriorating before the second fusion, I begged for them to help me control the pain. The np I was seeing didn't know what it was and told me that myelomalacia wasn't pertinent to my pain management. It was horrific and now it's just terrible. I don't know what to do but my life is no kind of life .
@trisha1114 I just wanted to say welcome to Connect.
Jennifer
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1 ReactionThank you 🤗
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1 ReactionHello, Myelopathy is the medical term for all the symptoms that your myelomalacia has caused you. There is a great support group with an academic core of physicians and researchers at this site: myelopathy.org. I have found it to be an excellent resource at all levels (knowledge, sharing, support, etc) as I try to learn to cope with the many challenges I experience from myelopathy/ myelomalacia. I hope this helps.
Myelomalacia, from what I could gather from materials sent from the national medical library, is after myelopathy. It's rare , more common in dogs lmao. A spontaneous spinal cord bleed caused the myelomalacia. I have myelopathy above the area of myelomalacia and that also required surgery as it was paralyzing me. But I am very happy to have another site to ask advice on my specifics and to learn more about it, thank you 🤗
Yeah, from the myelopathy.org website. Myelomalcia can be caused by myelopathy but can occur for other reasons as well. Thank you again , I couldn't find enough info to inform my pain management