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Myelomalacia: Let's connect

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

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@jenniferhunter

@dhansen78 (Continued from previous post)

The next surgeon asked me to do a spine epidural injection as a diagnostic test which I did. He also told me that my leg pain was not related to my cervical spine which was wrong, and that my scapula and arm pain was related to it. The spine injection took away all my pain including in my legs and body which I reported back to the nurse, and they just ignored the results because they didn't understand it and never discussed it with me. I started drawing my pain on body diagrams as it slowly returned and dating them. I kept this up for 5 months so I knew how fast it was changing since I started with this doctor. This is another big clue that I would learn later.

I was having intermittent trouble emptying my bladder. The spine injection doctor had explained that cervical cord compression could cause loss of control of bladder or bowels and this could become permanent if not addressed with surgical decompression. When my therapist worked on my neck muscle spasms and my spine was aligned, I didn't have issues, but when spasms moved my vertebrae, essentially the spinal canal got smaller and it put more pressure on my spinal cord causing the bladder malfunction because I was already in a state where there was no fluid space left around the cord. I reported this to the surgeon's nurse, and was told I should see a doctor about that. She didn't recognize it as a spinal cord compression symptom.

I saw a neurologist who ordered a new MRI which showed the amount of bone spurs had doubled within 9 months since the last imaging. The surgeon's nurse refused to schedule follow up appointments for me wanting me to wait 6 months to a year, and the neurologist stepped in saying I needed to be seen and scheduled an appointment the next week with another surgeon in the group who was his partner, and all he did was put me through repeating my neurology testing, and when I saw him again with those results, he recommended doing spine injections instead of surgery. I had a bad reaction to the first one and wasn't going to do that again. He wasn't going to help anyway because he had resigned from the hospital 2 weeks later for another job in a different medical center which my neurologist told me about. I called when a different nurse was on duty and got a followup appointment with the original surgeon and waited 6 weeks for that appointment. I shared my drawings of my body pain. He said I had pain in every dermatome, so there must be an inflammatory problem like MS and he mentioned a spinal tap to check? I wasn't keen on that. I was validated when he mention he could do a fusion, but he didn't know if spine surgery would make me better or worse, so he left it at that. My neurologist told me there were no indications of MS on my MRI and that if present, it should show lesions on the brain stem and she said there were none on the imaging. She had also done the nerve testing and those results did not point to MS. In his comments during the appointment, he was irritated when reading the notes from his partner who had seen me, and said that I hope he didn't just copy my notes. I didn't tell him that I knew this surgeon had resigned.

Then I had some episodes of vertigo and dizziness which can be related to the spine. It happened to me when my vertebrae were twisting on their own because of muscle spasms. One side of my neck was tighter because of a condition call thoracic outlet syndrome or TOS that I have which set the stage for this to happen. This will cause the vertebral artery at the sides of the cervical vertebrae to be stretched, and all I had to do was look up at birds flying overhead causing a kink, and it set off the first episode of vertigo spinning and loss of balance. I had to close my eyes and couldn't stand up. I worked with my physical therapist on this and she could resolve this by realigning my spine again, and using electric stimulation to block the pain signals at the nerve roots in my neck. When I gave this information in a message to the surgeon he dismissed me having his nurse say he is not offering surgery at this time, but let him know if things get worse. I just had told him it was worse because of the vertigo. How much worse did he want this to be? I started looking for another surgeon for an opinion and I looked at Mayo Clinic.

Every surgeon up to this point did not think leg pain was caused by cervical cord compression. In reading the papers of a Mayo surgeon, I found a paper that did mention leg pain related to cervical cord compression, and there was a term I had to look up, “funicular pain.” That lead me to medical literature with a case like mine described as a “rare presentation of symptoms.” I discussed this literature with my neurologist and another provider I had seen for years for the TOS, and no one would help me inform the dismissive surgeon of this discovery. He wasn't going to listen to me, and they didn't want to point out his mistake in diagnosing me. I really was afraid of being turned away again. The logical choice for the next opinion was the Mayo surgeon, and I sent in a request to see him with a letter and with the medical case literature I found. He accepted me and fixed my spine.

There is no diagnostic test to confirm that funicular pain is present; it is confirmed only by spine decompression surgery that resolves that pain. The epidural injection suggested that funicular pain was present because it took away all my pain symptoms temporarily, but that isn't enough proof. My neurologist was supportive of me looking to be seen at Mayo even though she could do nothing for me in her own health system because of politics. If a patient can cause a pain symptom to happen by changing body or neck position, there is a physical reason for that and it begs some thinking outside the box to try to figure out how it is happening. I gave the doctors plenty of clues that they should have taken seriously, but they ignored them. My physical therapist was a great asset for me in understanding what was happening physically and I could discuss the surgeon's opinions with her. If I can find my correct diagnosis by reading medical literature myself, then I think a highly trained spine surgeon should be able to do the same and much faster than it took me to find this. All of them except the Mayo surgeon (and Mayo neurologist) got it wrong. There was only one surgeon who was correct, and I chose him for my surgery. Jeremy Fogelson. I knew he was giving me good answers to my questions and he explained everything on the imaging. He even granted my request to do this fusion without hardware; it was just a donor bone graft and I stayed in a neck brace until fused. I had seen that mentioned in a paper too, so I knew it was a valid request. It was the right choice for me and I had excellent results. During all this time of seeing surgeons who wouldn't help, I was facing my fears and working through them, so by the time I met Dr. Fogelson, I had no fear, and that is a much better way to go through surgery. This is my story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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Replies to "@dhansen78 (Continued from previous post) The next surgeon asked me to do a spine epidural injection..."

@dhansen78 I wanted to follow up my story with the to the medical literature about "funicular pain" that changed the course of my spine care published at the National Library of Medicine.

Eur Spine J. 2011 Jul; 20(Suppl 2): 217–221.
Published online 2010 Oct 13. doi: 10.1007/s00586-010-1585-5

"Cervical cord compression presenting with sciatica-like leg pain"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/

You may also be interested in this post that I wrote yesterday as I described my spine experience. It is also 2 posts long, so also look at the next response.
https://connect.mayoclinic.org/comment/859812/