@sassytwo Tamra, if you type the @ symbol in front of my name, I'll get notified of your response. I'm glad you know about myofascial release therapy. It has helped me a lot. Yes, please do follow up and I would be happy to discuss with you after you consult your doctors. I spent a lot of time watching surgeons in videos from spine conferences and reading medical literature before I had my spine surgery. I have a biology degree, so I could understand a lot, and I looked up what I didn't know, and that is how I found my own correct diagnosis that 5 local surgeons missed. That is how I came to Mayo, because I found a surgeon who understood my symptoms there. The medical literature described this as a rare presentation and surgeons still miss the connection to cases similar to mine. Basically, the spinal cord compression in my neck was generating pain all over my body that would change location when my body position changed, pain and weakness in my arms and legs, uneven gait and difficulty emptying my bladder. It didn't follow the predictable maps of compression at nerve roots. My surgeon was excellent and he gave me back the coordination in my arms. I am an artist, and to express my gratitude, I painted his portrait. He is a spinal deformity expert who is often an invited instructor at spine scoliosis conferences and teaches in the Mayo neurosurgery program. Here are a couple links.
My story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I’m not sure how long ago this conversation was posted. But I had a 3rd cervical fusion yesterday. The first was in 2006 at C5/6 the second was C6/7 with removal of 3 spiky osteophytes 2 of which were punctured into the spinal canal (thank goodness there was not a leak!) the 3rd was new that was not on the imaging 3 moths prior. However, the scar tissue had not stopped growing from the 2006 ACDF and caused 2 times the length of the estimated procedure and an assistant to be called in for extra help because of the complex nature. In December of 2023 I had to have a complete removal and replacement of the neurostimulator I had implanted in 2008 because the 2 of the wires were not working anymore and caused the generator to not work correctly that was replaced in 2022. The scar tissue was an even worse case that caused 2 of the 3 incision’s to be enlarged and a second laminectomy above the planned T8 to allow for the unthreading of all of it to allow a paddle when they final released the 3 different lengths of floating leads from the original procedure.
That surgery I feel is still in a healing mode in my thoracic area 7 months later.
Yesterday I had another planned ACDF and posterior stability rods from C4 to C6 then flipped over to start the ACDF @ C4/5 and they re did the cage at C6/7 as well from March of last year. The removal of new end plate osteophytes that were spiky again and a disc removed at C4/5.

My lumbar CT scan is similar to my cervical spine. But there is a lot of arthritis in there that has never been removed. When the stimulator is functioning properly I do not get stuck in bed with out being able to logbook as often. More in the winter but when the battery needs replaced, it happens at least 3 times a week. I’m not 50 yet, but I am single and live alone when I am able to work and support myself.

Is there a group of physicians that can help me understand why I grow much scar tissue and why it calcifies in places in my spine? It happens centrally as well as bilaterally.

I have a belly full of scar tissue after a 1999 C-section and then a partial hysterectomy 9 years ago followed by a full oophorectomy a year to the day later which ended up reopening the c-section and nicking my artery enough a specialist need to be called in. I recently found a record of a diagnostic laparoscopy that I was told afterwards there was nothing wrong with my, the record stated it was either microscopic edemetereosis (spelling?) or the type that grows in the muscle of the uterus. There was a line or some indication of evidence to support one or the other. In my mid 20’s I was told I was creating cysts when I ovulated. That the er drs were not correct when they told my family and myself that I was attention seeking.

So I’m concerned I’m crazy for being worried about more unseen scar tissue causing me difficulty being independent and unable to do some daily living activities.

Or being so incredibly frustrated that I can not get an answer of what type of doctor or team to help me understand if I can find some strategies to facilitate a new way to reduce the connective tissue problem and reduce some unnecessary pain and stress.

I want to be able to not only be independent but self supporting. I have no interest in trying to live on a limited activity schedule or budget! I’m not yet 50! I’ve had horrible experiences with er doctors and lack of explanation of what evidence does show possible causes to the end result of not being or feeling like I able to be a productive participant in my own life let alone a community I miss deeply.

Please if anyone has a way for me to begin to identify a start of a small solution, I’m am being as vulnerable as possible by asking here. Because I have not been given anything other that you a special kind of case. Do loose hope. I’m sure you figure something out.

Sincerely,

Aubrey