Long post ahead...
I've been dealing with a lot of issues since 2013. At that time, I legit felt like my head was going to come off my neck. My one side (right side) got weak. It wasn't until 2014 that I decided to get an MRI that showed moderate stenosis from C5-7 and mild at C3-4. Unfortunately, I made zero choices other than decide to "live with it" despite being given a neurologist referral.
Fast forward to 2019 after pushing through so much (playing ice hockey games, long drives where I can barely support my head or keep it up, not being able to sit in stadiums, balance issues on escalators, etc)... I finally said enough is enough. I seeked out a surgeon who told me I was "too young" for neck surgery at the age of 42. They took x-rays but refused to take new sets of MRI.... yet I was feeling weaker by the day, especially on the right side and especially while walking and the legs and arms.
I decided end of 2019 to make yet another chiropractor visit who, at the time, was using an activator tool to adjust me. I felt lots of strength the first time it was used but I kept going back for a few months and only got worse and worse.
This led me to my first MRI in almost 5 years that revealed severe stenosis at C5-C7. Images of the first set of X-RAYS and MRIs I ever had can be seen here (copy/paste link if you need to see it):
X-RAY Jan 2020 (January 2020)
MRI Feb 2020 (February 2020)
From here in March of 2020, I decided to see a neurosurgeon who confirmed I had cervical myelopathy and said I should consider a 2 level fusion from C5-C7 to address this. He basically said the decision was mine but I'd likely see this worsen in 6=12 months. I, of course, seeked other opinions... most of which said C5-C7 fusion was necessary but a few people said to consider a Mobi-C at C3-4 on top of it, and one surgeon who said go 4 level fusion.
I'm looking at my original x-ray from 2020 and trying to figure out why my head is so titled to the right. Is something disconnected? Is something broken somewhere? What is it? Regardless of that, I was getting worse and worse. I did stop chiropractic care for reasons of I was feeling worse and weaker and felt the chiropractic care was not helping. Other than this, things became pretty urgent for me when I was driving and both my arms when tingling, numb and I lost all feeling and started to have dizzy sensations. I pulled over immediately and stood up an sure enough, when I was standing I felt fine. So whatever the issues are, it was because of me sitting.
The Neurosurgeon made this urgent in the middle of a pandemic and I had surgery in July 2020 for a 2 level fusion. Within 3 months I went to PT and within 6 months I was considered close to fully fused. Here are the x-rays from my 6-week post op:
6 Weeks Post-Op 2 Level Fusion (September 2020)
During PT, I still didn't feel "right". I was hearing lots of crunching and grinding sounds at the upper cervical and my head still felt out of place and I was having more right sided issues. I was still feeling the weakness as well and decided, at the 5 month mark to get another opinion and a new MRI. It didn't reveal much short of my spinal cord now being decompressed from C5-C7 but me still having issues at C3-4.
MRI from December 2020 (December 2020)
My 2nd opinion told me consider an artificial disc at C3-C4 and he was ready to do it. The first surgeon refused and told me only an extended ACDF and only at the one year mark. I decided to wait until the 6 month mark with my latest 6 Month ACDF Post-Op X-RAY which looked like this:
6-MONTH POST OP ACDF XRAY (January 2021)
I decided again in march to start the process of getting an opinion on C3-4 from a 3rd surgeon based on the history I had. Something upper cervical was still not feeling right and I was still having a hard time keeping my head up, which felt more off and to the right. The pain was and still is all right sided. He said he agreed with a Mobi-C but mainly because my C4-C5 looked ok and there was no reason to fuse this over anything else to get to C3-C4. The thought was "Why fuse a good disc to get to a bad one?". So we proceeded on this.
2 Week Post Op XRAY from Mobi-C Artifical (May 2021)
I was still having issues though. They said the spacing and disc height looked great on this 2 week post op and I just needed time to heal. Then comes my 6 Week Post Op
6 Week Post-OP XRAY after Mobi-C (July 2021)
My big concern here was that the piece between the 2 end plates had slipped or collapsed on me. But the doctor insisted it was just the way the X-RAY was taken and he wasn't pleased with it, but said everything was fine, I looked great, felt that no other X-RAY was needed but because I was still having right sided issues as I mentioned before (including myelopathy symtoms that would still come and go) that I could benefit from PT at this point.
Fast forward to PT and naturally the whole muscular thing gets brought up, with the focus being on my SCM muscle and really taking care of that. PT has of course, been temporary, but I decided to wait until I was a full 1 year ACDF Post-Op and 4 month to have them focus more and look at my latest X-RAY to determine more.
4 Month Post Op ADR & 1 Year Post-OP ACDF XRAY (September 2021)
So here I am most recent above. I was told I was "tilting my head" during the X-RAY. No, I was not... at least not willingly. I feel as if my head is tilted though. I am also concerned the Mobi-C is now slipped forward, thus making things above it to slip forward or to the side. My pain levels did decrease thanks to PT but in the same sense, I still have the same off-balance feeling with my head making it difficult or near impossible to do things like: drive long distances, sit in a movie theater, sitting in an arena or stadium, sitting in a barber chair (I'm afraid to get haircuts because I feel like my head will fall off my neck), using escalators, etc. Every day things that have become very challenging for me and ruining my quality of life. My neck just does not feel stable.
I asked my PT and on top of the SCM, they mentioned my C1-C2 may be out of whack and out of place, could be a dislocated joint of some sort that needs to be put back but obviously chiropractic is a huge no no now and they still want to focus on the muscular issue to support my neck and stabilize it more. I feel like maybe whatever I am describing, is being missed by all surgeons.
What other tests can I go through to get more answers? At 44 years old, this is not a normal life. Even just being able to drive to see my family for gatherings would be nice. The rest, I can survive without. Any one have any thoughts or comments here?