Myelomalacia: Let's connect

@robinsitzmann
Here is some information about stem cell research for spine trauma at Mayo Clinic with Dr. Bydon.
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/stem-cell-treatment-after-spinal-cord-injury-the-next-steps/mac-20488605
https://regenerativemedicineblog.mayoclinic.org/2021/06/11/regenerative-pipeline-for-spinal-cord-repair/
I find this very interesting and hope this will lead to good outcomes for patients.

Here is the update on my surgeon appointments. I saw 4 different surgeons with regard to the Myelomalacia 2 Neurosurgeon, 2 Orthopedic. Of course there were conflicting opinions, one Dr. said she would do surgery but, it would end up being 2 surgeries and she didn't want to do that....2 separate fusions. Dr. 2 appeared perplexed and said he wouldn't suggest doing anything come back in 6 months. Dr. 3 spoke with me in more detail and said I would definitely need close watching, surgery is most likely on the horizon come back in 3 months. Dr. 4 was fairly insistent on surgery within the next 2 weeks and fusion of 2 sections. I have chosen Dr 3 with the help of my PCP, this Dr. has the most knowledge and skill behind him and is affiliated with a large hospital. I am comfortable with waiting as the reading I've done seems to lean towards additional issues following surgery. I have been told in some patients the Myelomalacia doesn't ever progress. Is anyone else taking the wait and see approach?

@dhansen78 Thanks for your update. I'm glad your primary care doctor could discuss this with you to assist in your decision. It is a big decision, and you cannot change it once the surgery is done, so it makes sense to get a lot of opinions before you decide what is best. I had 6 opinions, and only one surgeon got it right, and I chose him of course. Fusing vertebrae does put more stress on adjacent discs, but if you maintain good posture, and stretch out the tightness that puts extra pressure on the spine, I think it will go a long way to help prevent future issues. I periodically stretch out my incision scar when it gets tight and stretch tight muscles in my neck. I have learned this from my physical therapist who does myofascial release to loosen the overly tight tissue and get the body moving again properly and with good mechanics. My surgeon told me that maintaining core strength was the best way not to need spine surgery again. I find riding my horse at a walk helps a lot with back strength and posture and all of that supports my neck. I am 6 and a half years post op from my fusion with no further spine issues.

Thank you Jennifer. I appreciate you sharing your story. It helps to know what others have been through when making these decisions in uncharted territory. I will be asking for physical therapy so the professionals can tell me what can help and what will not. I am determined to keep this in check and avoid surgery altogether. Glad you have had a successful surgery and subsequent recovery. I will hope you continue down that road. Thank you again for the reply.

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

@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/

@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/

I had my first ACDF in 2010, laminectomy in 2010, and 2nd ACDF in 2013. I was never pain free or normal since then. However, I was never told about myelomalacia. My condition was declining and within the past 4 yrs, my quality of life is now very low. I have been reporting my unusual and new symptoms continually during this time. Multiple MRIS, EMGS, neurologist, neurosurgeon, orthos, pain clinic...nobody told me about this. Even sent me to a urologist without even considering a spine issue. I KNEW all of these problems were from my neck and I was just dismissed, told to lose weight and live with it. The most recent MRI from June shows chronic myelomalacia. ALL of the symptoms that I have been begging for help with. Now, my condition is so bad that I can't function on my own. I read if treated early, it can be managed and possibly slow down progression. I am livid and frightened. Tried to be seen at Mayo but they wouldn't take me or even look at my reports/scans. Where do I go now? Is this malpractice on doctors or radiologists for a decade??? I am only 54 and living like a 94 yr old.

Jpko2023, some of this resonates with me. I had an MRI and read my report which mentioned the Myelomalacia more than once. Neither my PCP, nor my Neurologist caught it.....I looked it up and contacted my PCP about it, which then caused a new MRI etc. I would always suggest that each patient advocate for themselves by reading the results and questioning anything you don't understand. My question to you is, did you ask why Mayo would not take you or look at your scans?