Cervical myelopathy caused by herniated disc at C4-6 level

@debbiepinkston59 That's a good question. Thank you for asking. Just to get some background on your son, I looked up his diagnosis and the treatment center where he is receiving stem cell injections collected from his own blood. Early on, I too was hopeful that stem cells could solve my problem and keep me from having surgery. I looked up surgeons who were researching to see if stem cells could regenerate bad discs, but it wasn't possible yet. Your son's spine problems are complicated by having that C1/C2 instability and the lower 2 bulging discs. What I was reading about C1 and C2 was that ligaments are more involved with stability because of movement needed for turning the head and they don't have the same structure for spine support. Any posture of looking down as in the photo of your son likely will aggravate his alignment of C1 & C2 (retroflexed odontoid). When you have instability at C1 or C2 that would not be good to do. This is also a condition that could easily become dangerous if more movement and instability occurred there because of a force such an accident or aggressive chiropractic manipulation, etc. The looking down posture is hard on me too and too much will cause my C1 & C2 to rotate because of a muscle spasms in my neck. I also have thoracic outlet syndrome which causes one side of my neck to be too tight setting me up for this. When that side kicks up, it will turn C1 and C2 which stay rotated and start causing headaches, jaw pain, nauseous feelings. Before spine surgery, I got vertigo a few times when this happened. Can you son play the guitar without needing to look down? .... essentially the same as if he were in a neck brace?

To answer your question about muscle atrophy.... yes I lost muscle in my triceps on the back of my arms, biceps, and muscles on the scapula, and lost about 50% of my muscle mass before I had spine surgery and because of spinal cord compression. I was not able to hold up my arms for any length of time or to have fine controlled movement which was a problem because I am an artist. Driving a car or pushing a shopping cart was exhausting. After a trip for groceries and shopping for a hour, I was so wiped out, I had to sleep for an hour in my car in the parking lot before I could drive myself home. The only remedy for that was to decompress the spinal cord with surgery.

Your son has a complex case because of the C1/C2 complications in addition to the other bulging discs. You need a better surgeon for this who is experienced in and takes complex cases. I think a trip to Mayo would be an excellent idea and I would encourage him to apply because there is usually a long wait to be seen. My neurosurgeon, Jeremy Fogelson, would be an excellent consult for him. You can request to have imaging sent to him when you apply. https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

Since my recovery from surgery 6 years ago, I did get muscle back, but not all of it. I probably got back about half of what I lost. My deficit is still greater on my left side, and I look pretty normal, but I know what I started with before my injury. I do lift 40 -50 lb hay bales sometimes when I feed horses. Horse back riding also helps because it builds core strength, so that helps posture and builds strength to support my spine and that has developed my biceps somewhat, but I just don't have the strength I used to have before the spine problem began. I was worried about surgery, and had to deal with my fear. It came down to a choice of the disability that was progressing and would certainly get worse or saving my talent and ability to do my fine art work. My work defines who I am, and I didn't want that to change. Having done it, I also don't think cervical spine surgery was that bad to go through. I know that can be different for everyone, but you have to find an excellent surgeon who has the technical skill and expertise to rescue your spine with minimal negative consequences.

This is the link for appointment requests for Mayo Clinic should you decide to get a second opinion here http://mayocl.in/1mtmR63.

How long has your son had muscle atrophy and minimized function?

Thank you Jennifer! You are the first person to confirm that these spine problems could cause atrophy. My son has learned to not look down when playing the guitar or anything else-eating, writing, etc. When he does, his headache gets significantly worse. He has adjusted his life so much. It is hard to drive, walk his dog, etc.

I'm so glad that your surgery was successful and that you're able to do the things you love.
My son's neurosurgeon is experienced in the fusion of skull-C1-2, but we definitely want a second opinion. Thank you for the referral. It sounds like you had an excellent surgeon.

@debbiepinkston59 You're welcome. Dr. Fogelson is an excellent surgeon and highly respected. He also has compassion for his patients and is very down to earth and he loves his job.

Here is my patient story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I was diagnosed with Cervical Myelopathy 8 yrs ago. I had surgery from C2-C6. I can hardly walk, and have neuropathy throughout my whole body. I used to be an artist (oil painter), knitter, gardener, and jewelry maker and of course, I made my homemade bread often. At this point, I have become an expert on changing the channel on the remote.
All I can say is that I have learned to accept it.
I was recently put on Lyrica for nerve pain, it is my opinion to not get started on such a multi-symptom drug.
It's a spinal cord injury; unfortunately, it cannot be healed through surgery or drugs.

@barbararuzzene Hello and welcome to Connect. I appreciate your courage in sharing your story and I hope that your participation here is meaningful. You are welcome here in the community and I am sure you have a lot of knowledge that can be educational for others. That must have been a big change for you. I know this is something that Mayo is researching about healing and regeneration after spinal cord injury. I always try to be hopeful and offer my support to other patients. What I can share with you is this story from Mayo Clinic.
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/stem-cell-treatment-after-spinal-cord-injury-the-next-steps/mac-20488605
Do you find enjoyment in looking at the creative work of others or enjoy nature and being outdoors?

We did go to Mayo last year and saw Dr F, he looked at the imaging and said he didn’t see much as fare as bulging discs and RO with pannus or CCI. Interesting how five neurosurgeons can look at the very same images and have completely different takes.
My son had ACDF surgery in October 2023 and will have fusion surgery sometime this year.
Sadly Mayo wasn’t much help as they couldn’t see the problems, things that I can clearly see on theMRI images as I learn more and more about these conditions. I deserve another Masters degree for all I’ve learned !

@debbiepinkston59 I remember we discussed a lot before you came to Mayo. How is your son doing now? Has the surgery improved his condition? Could you describe what levels were fused in October and what the next surgery will entail?

I'm glad to hear from you again.
Jennifer

He was fused C4-5-6 in October, and sometime this summer we hope, will be skull to C3. Hoping later on C3-4 doesn't need attention.

@debbiepinkston59 There are a lot of medical studies suggesting that fusions increase the risk of adjacent segment disease and that the longer length of the fusion can increase the risk further. If C3-C4 is the only mobile disc left unfused in the upper cervical, it will have a lot of stress on it. With C6-C7 still mobile, that probably gives some ability to bend forward. I kind of worry about other adjacent discs too but I try to to maintain core strength and good posture. I know these are complex problems and choices are not easy.

Can your son play his guitar? I know that was a concern before surgery. I sure hope that he can and that it helps with recovery.

Jennifer