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Myelomalacia: Let's connect

Spine Health | Last Active: Feb 21 9:26am | Replies (50)

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@dhansen78

@jenniferhunter I also wonder out of the 6 opinions you had....how did you know the one you chose was the right one?

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Replies to "@jenniferhunter I also wonder out of the 6 opinions you had....how did you know the one..."

@dhansen78 Thanks for asking. This is a long answer that will cover 2 posts. The short answer is only one surgeon understood the problem, and I'll explain the details of how I evaluated myself.

I do have some medical and research knowledge, and during the 2 years while I was consulting surgeons who would not help me, I was reading medical papers online, looking up papers by surgeons I wanted to consult to see what their interests were and watching online presentations from conferences for spine surgeons, so I learned a lot about the symptoms that were connected to different problems, and what the surgical solutions were. I got a sense of if a surgeon was explaining things well. I looked up clinical trials and the manufacturers of any spine device implants I saw mentioned.

I also knew how to reproduce my symptoms and change where I felt pain by changing the position of my neck and spine, standing vs seated or laying down. That was proof to me that it was a spine problem producing the pains because I could turn them on and turn them off at least in the beginning before there was more bone growth pressing into my spinal cord. That was a huge clue, and surgeons didn't want to pay attention to that. I discussed these symptoms with my physical therapist who was treating me at the time.

If you have pain caused by compression at a nerve root where the nerve exits the spinal cord between vertebrae, that is very predictable as to where pain is felt in the body as to exactly what level is compromised. I didn't have nerve root compression until my disc had collapsed enough (50%) that I could side bend and cause the bones to contact the nerve root and cause an electric type pain. If I straightened up, I didn't have that pain, and it happened because the vertebrae were closer together, and the bend moved the bones closer. I only had spinal cord compression and no stenosis around the nerve roots. When you compress that big cable of nerves that are the spinal cord, it is potluck what gets compressed and because the spinal cord moves and floats within the spinal fluid and changes with neck positions, it will change where the compression can happen when you move. One of the online surgeon presentations showed drawings of how the spinal cord will shift when bending, twisting or straightening the neck.

One surgery consult happened after I had fallen asleep sitting up and woke up with a lot of head and neck pain spasms. I had to sit straight as a pole, or I had lots of pain. I was in that state for a couple weeks and had an exam with a neurosurgeon who told me the spinal cord doesn't feel pain, so this must be something else. Oh, really? I knew better. I told him the pain got worse and got him to authorize a new MRI and never went back. I was seeing a physical therapist at the time, doing myofasial release and working on my muscle spasms. I had a good session and was feeling better, and at home, I rolled my back on a wooden roller that has 2 knobs that will massage the muscles next to the spine. I tried it and every level of my thoracic spine clicked and reset itself. Then I put it under my neck and just turned my head so I could tap each side of my neck and the lateral spinous processes, and that did the same thing, it clicked and reset every level of my neck with a light tap. Only C7 was left askew, and while on my back, I did a bridge and raised my lower body up, and it clicked and reset itself. I felt so much better. Every level had shifted back where it belonged, and I had a bit of laxity that allowed this. After the reset, the pain stopped, and I didn't have to be straight as a pole. The surgeon never even put his hands on me, so he never felt that my spine wasn't aligned properly because of a muscle spasm. He may have felt the strength in my hands and fingers but that was it..... Next.

The next surgeon looked at my MRI by himself, didn't explain anything to me except to say that I had significant spinal cord compression that needed to be fixed. He recommended a fusion and wanted me to think about it, but he wouldn't answer my questions and spent 5 minutes at the most with me. I had to wait for a call from his PA to ask questions. They would only do a procedure with a PEEK implant and a titanium plate in their doctor group owned surgery center and do about 10 of these cases a day. I had concerns about reactions to metals in implants and asked to do a test for metal sensitivity at a lab I found that does this. They refused and said that because I had a titanium metal crown in my mouth, that I already had an answer. I was scared during the meeting with the surgeon and my blood pressure spiked. He wrote in my notes that I needed to see a psychiatrist even though he never said that to me. This started my panic attacks that went on for months. I was going to try to go through with the surgery, but I was having a lot of leg pain, an uneven gait like a limp, and was dizzy at the next appointment. Only the PA saw me and relayed a message from the surgeon to go to a rehab doctor they recommended and fix the problem with my legs, and then I could come back to him for neck surgery. This just isn't possible when the pain in the legs is being generated by spinal cord compression in the neck and they wouldn't listen to my story about turning my head and changing my symptoms. Ironically, they sent me quality of life surveys sniffing for business for a few years after my spine had been fixed elsewhere. I went to see the rehab doctor and got there, but they never heard of me even though I called and made an appointment. I assume they called a wrong number to confirm because they never called me. Moving on..... I don't think I can trust a doctor who would not listen to my concerns or answer my questions with only one way to do something. Not all patients fit the mold. He couldn't explain my leg pain. (continued in next post)