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chronic pain with myelomalacia
in 2018 had leg weakness so had ACDF surgery 3 discs C5-T1
diagnosed with myelomalacia (like a "dent" in the spine)
doc said i would get better but never 100%
i did get better could walk with out assistance and golf (not like i used to). then 12 months later legs got weak. got various treatments including stem cells. did not help. at 20 months post surgery was walking with a cane due to leg weakness. saw two neurologists that ruled out any other cause. they were surprised i was getting worse. then the pain started. it was a couple hours a day most days. now 3 years later i feel like ability to walk is worse. and pain several hour most days. OTC pain pills don't help much and docs didn't give me anything better.
life is really hard right now. walk with a cane short distances. i exercise 40 minutes total per day treadmill and rower. i never improve.
sent file to mayo clinic last year they declined to see me.
going to see a pain doctor but i am skepitcal.
i can't do anything around the house, wife and kids do everything that i used to do
fighting hard to not get depressed
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This sounds really unusual to me because I've had the same vertebrae in my neck fused, only not all at once. I had my first fusion procedure at the C5-C6 level, and then about a year and a half later I had a second procedure at the C7-T1 level. The surgeries were performed at 2 different hospitals by 2 different neurosurgeons, and the only complications have been not being able to turn or raise and lower my head like I used to.
If it hasn't happened yet, I'd request an new MRI of your upper spine and neck, something doesn't sound right to me.
I’m so sorry and I would be skeptical of pain clinic as well. I was on low dose tramadol with good relief. I was interested in a spinal stimulator but was not a candidate (not enough sproom in my spinal canal s/p multiple surgeries). They convinced me my low dose tramadol was horrible and that I needed an intrathecal catheter for morphine directly into the CSF fluid. Fast forward 6 years and thousands of dollars later and I now have arachnoiditis, scarring around my spinal cord. Causes pain when I sit more than 15-20 minutes. It’s a progressive disease without treatment.
Well i had a lot of damage in neck and several bone spurs. Two docs said they never saw a worse MRI pre surgery. Asked if i was in a car accident but i had no incidents
So MRI shows obvious “thinning” of spine (looks like a dent) which matches pictures you can google of the condition
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