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Replies to "in 2018 had leg weakness so had ACDF surgery 3 discs C5-T1 diagnosed with myelomalacia (like..."
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.
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/
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.
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
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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.