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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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You mentioned Mayo Clinic wouldn't see you. I think if you find one of their specialists who are taking new patients, you can call and just ask for an appointment, even though it may take several months to get in. You have been dealing with so much pain for so long that it may be worth a try. I am assuming you were trying to be accepted by a Mayo Clinic team which has not agreed to see you but I think you can make an appointment with a particular doctor on your own. I hope so. I feel for you, having lived through years of pain myself, but much improved due to surgery at Mayo Clinic, and having doctors who will prescribe pain meds when all else fails, including my local internist. Wishing you good the best on your search for relief, and finding the right doctors who will try their best to help.
I do not know any doctors. I submitted request thru website. Spinal area and nuerology (i think) both review my record. Assume they think they can not help. They had recent MRI
@scottd7 All surgery creates scar tissue and that can get tight causing pain. I am a cervical spine surgery patient and I often stretch out my scar tissue. It progressively tightens up, so this is my maintenance therapy. I have had a lot of myofascial release with my physical therapist that has helped me a lot.
Here is our discussion on MFR with lots of information.
Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at http://mfrtherapists.com/
@jenniferhunter thanks for the reply. does scar tissue show up on MRI? had mri last year and i don't think they said anything was there.
@scottd7 scar tissue within muscle or tight stuck fascia doesn’t usually show up on an MRI. The fascia is a web similar to a spider web that is stretchy and can change shape and reorganize itself. It can get dehydrated and stuck and not move which leads to tightness in muscles and perhaps limits movement. Habits also add to getting stuck if you don’t move enough, for example, sitting too much and not walking may lead to tight hip flexors. I know in my experience with muscle spasms along my spine, it can limit range of motion and cause pain. I had a lot more of that before my spine surgery. My surgical scar does get tight and I need to stretch it out. I can have tightness that extends from my neck through my chest and to my pelvis because of tight fascia. I have learned from my PT how to stretch to help myself function.
If I am reading this correctly, you have requested an appointment at Mayo, have you sought help from a doctor who could refer you? They may be more inclined to accept you if the referral to them is coming from one of their peers, just a thought.
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1 Reaction@scottd7 I agree with dhansen, ask one of your doctors to refer you to Mayo. I did that after being declined, my neurologist sent in a request and I was accepted, back in 2020.
Best wishes for some relief. Pain is so difficult to overcome.
Thank you
can i ask what your condition was that you got treatment for?
and what was mayo able to do for your pain?
thanks
I have myelomalacia through 2 levels in my cervical spine. Does this HAVE to be surgical, as in decompression, and if so is a fusion normally also considered? Opinions?
You don't mention the cause or severity. And treatment depends on the cause. Most causes are from compression or trauma to the spinal column, so many of the treatments will involve surgical intervention. Like repair and stabilization of fractures, or decompression of the cord with laminectomies, etc. If it were me, my specialist would be a highly qualified neurosurgeon. Discuss with them the causes, severity, treatment options including options other than surgery if available. If a laminectomy is performed at more than one level sometimes fusion is necessary as well to stabilize the spinal column. With the spine, often times surgery is the only option. Good luck and God bless you.
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