Hey there, new member here, stumbled about this group so I figured I'd give this a shot. I will included images as well in case someone can give me advice and tell me what my next step it. Be warned, long post and lots of info below.

Was dealing with lots of issues since 2013, all right sided, but pushed through a lot (including some odd type of off balance feelings for many years, especially when sitting down.) The short of it is, driving and sitting down in any weird position makes me feel like my head is going to fall off my neck. This has been going on for many years and the struggle is real. I'm ok standing up, walking around, laying down and was ok while playing ice hockey for many years during this.

Had an MRI in 2014 where they suggested I go for a neurosurgery consultation after seeing some herniations and spinal stenosis in neck, go to pain management or live with it. Because I didn't want to "ruin my life" with a neck surgery, I decided to live with it. All this after seeing chiropractor after chiropractor for 6 months. I regret not pushing further for the surgeries and regret the chiropractors.

Fast forward to end of 2019, after never seeing a chiropractor again since April 2014, and I was struggling. I think an accident in 2018 triggered more off in my neck and made it worse and then a road trip across 4 states in 2019 absolutely ruined me and I could not drive right or even sit in a car without my neck feel like it was being CRUSHED.

End of 2019 comes and I decide to see another chiropractor again. Things get so bad that I basically feel like I could not walk right and I was becoming weaker by the minute and lost tons of muscle mass and tons of weight in the process. They decided to take these x-rays and MRIs and after I was done told me that they still thought they could treat me since I was responding to treatments.

The words were "We don't know if you are ever going to fix this but you will be coming here the rest of your life. It's either that or have a neck surgery which will truly be permanent and who wants to walk around like a zombie with a surgery?" My immediate thought was "Won't a permanent surgery just at least help fix this?"

Anyway, here are the main images I had in 2020, which show sever spinal stenosis:

January 2020 Images




I was strongly convinced something was wrong with the upper cervical but needed to get the right opinions so I went to a neurosurgeon who confirmed cervical myelopathy due to severe spinal cord compression at C5-C7 and I likely had 6-12 months before I'd need a surgery and it could only be a fusion. He did say C3-C4 had a herniation but, he would not touch it.

I decided to get a few more opinions

Opinion #2 - You don't need surgery at all. You're too young for that (I was 42) and I have people coming in here bent over in pain, much older, that absolutely need surgery (I never went back to this one)

Opinion #3 - You definitely need a two level fusion at C5-7. You might be able to benefit from an artificial disc at C3-4 but I don't like those hybrid surgeries and would only do what is necessary and see what happens with that.

Opinion #4 - I don't see any room for an artificial disc in your case. As a matter of fact, a 2 level fusion will not resolve your issues and I think a 4 level fusion would be necessary.

Opinion #5 - I would only stick with a 2 level ACDF C5-C7 surgery since that is what is necessary.

So, I decided to stick with the first neurosurgeon (half of these opinions were Orthopedic surgeons, the other half were spine surgeons). He had a very good reputation in the area and people said he had magic hands. The surgery became urgent when both my arms became extremely numb, tingled and I lost feeling in them while driving a short distance. I woke up from the surgery, had to spend a night in the hospital (in 2020 mind you, thankfully I was fine). However, I still noticed my upper cervical issues I remained.

The surgeon did tell me it was only to stop the progression and only guaranteed me that 50% of my symptoms would resolve. I was a little bummed out they made me stay in the hospital. I wanted to be released the same day because I felt like I didn't need to stay. They sent me home with a small soft collar, told me it wasn't necessary and to use it for comfort when needed. But also had me use a bone growth stimulator at some point post-op.
He did tell me that when he did the surgery, it was worse than he expected and the nerves were very much crushed at C5-C7 but he took care of it all. I was a bit disappointed though he wasn't the one to discharge me the next day and he sent his PA to do it.

I had a few follow ups in 2020 where I was pushing for the artificial disc at C3C-C4 because I thought this was causing my upper cervical issues at this point. I was told that "You're having issues because you are healing" and at the 6 week mark, I was sent to PT after these x-rays were taken from my fusion:

September 2020 6 Week ACDF Post-Op:



The fusion looked good enough for them to send me on my way for PT and come back at the 3 month mark. So I went through the 3 month mark with PT and the x-ray sure looked different, as if the upper part of my spine was losing it's curve all together and reversing. I was told that it may just be the way I was positioned with the x-ray and not to worry about it:

3 Month ACDF Post Op October 2020




I basically did PT from October to December, still feeling like I had issues, before I went back for my 6 month in January 2021. However, before my January 6 month, I decided to see another opinion from a spine surgeon out of state (Virtually) who sent me to my next MRI since my current surgeon refused to send me to one within 6 months despite me having issues still. The MRI did confirm that the spinal stenosis from C5-C7 was gone, but the herniation and stenosis at C3-C4 were still there and could be causing me issues still.

This surgeon did suggest an artificial disc at C3-4 while my current surgeon told me "I wouldn't do that. Come back to me at the 1 year mark if you are still having issues and if so, we'd have to restart the entire process over again before giving you any surgery, but I would do nothing but extend your fusion to 4 levels." I asked why he refused to do an artificial disc and his response was "Because of the way your neck is structured".

Anyway, here is the December 2020 MRI:

December 2020 MRI



So I was a bit frustrated and the spine surgeon said "You can have this surgery right now if you want. You don't have to wait a year. As far as I can tell by the last x-ray you look to be fused pretty good and you should be having less issues from this MRI. But clearly you're still dealing with pain and issues that are not resolved. I'll do the surgery if you want or if you find someone local that supports ADR, you can try them".

So I decided to find one more surgeon I have yet to go to do. My mindset was "Whatever this guy tells me, is what I proceed to do". I presented all my images to him and asked him if I brought this to him originally, what he would have done, and his answer was "C5-C7 for sure... I may not have touched C3-C4 but since you are coming to me now afterwards, and still having issues, your case is unique. You have a good enough C4-5 that I'd hate to fuse up on a good level to get to a bad one. So ADR is the option on the table with a Mobi-C. We normally would not support this but in your case, it seems like the right call."

After many consultations with questions and such, I decided to do the C3-C4 surgery in May of 2021. Once again given a small soft collar in a different hospital, told to use it for comfort, and was sent home the same day (thankfully)

The 2 week X-RAY looked great *BUT* I was still having issues after I woke up form surgery and those issues still persist today. So I wasn't sure what this addressed but figured it needed time. But here was the 2 week x-ray:

2 Week Post Op ADR June 2021



The surgeon was very surprise at how much disc height they were able to add with this, because my case unique and he didn't think they'd see this with degenerative disc disease. However, I was still having right sided issues, the same issues still persisted, with pain. Maybe it was less severe than before but it was still there. We decided to wait to see what the 6 week follow-up had. Naturally, my 6 week post-op x-ray concerned me. It looked like the artificial disc was collapsing on me:

6 Week Post Op ADR June/July 2021



Once again, off to PT I go. However, I chose a different PT place since the last one I went to (I went there before and after my ACDF) really addressed nothing. I stuck with this new PT place for 6 months form July - December 2021. The first few weeks were rough but things got better along the way, though I still didn't feel right and maybe had temporary relief.

During my PT time, I had my 3 month follow-up where my x-rays were MUCH different. Like very concerning different. To the point where I actually think my ADR failed. If you look at these images, it looks like it collapsed forward and collapse on the right side of my neck, where I am *still* having issues and whenever I drive, I feel like the right side of my neck is getting crushed and here I am again, feeling imbalanced.

3 Month Post Op ADR September 2021




All of this is really affecting my quality of life. My days are basically just staying home, not being able to drive to go see my own family even if they are within 10 miles away. Thankfully I work from home but still, what if I could not do so? I asked the doctor about this because it's clearly different and it looks like my entire upper cervical shifted badly. His response was "Looks like you're tilting to the right with your head and this isn't a good x-ray".

He refused to do another one due to "insurance purposes" and sent me on my way like this. Apparently he has a 100% success rate on ADR with Mobi-C and never had to a revision but told me to come back at the 1 year mark if I still having issues. I'm still having issues.

Anyway, here I am, having problems. Problems I think no surgeon has been able to pinpoint or address. Yes, they addressed the common problems found on the images but I feel like that's all they were looking at and not looking at more. I'm convinced I have upper cervical issues still, but what the cause of it is, I don't know. Has the Mobi-C failed leaving me with the same issue? Is it something else other than the Mobi-C? What happens if I go and get this addressed with a 4 level fusion revision surgery and I *still* have the same issues as I do now? What sort of imaging should I ask them to do to further confirm if I have issues at other levels or that an artificial disc failed on me? How can I guarantee a surgeon will "get this right" so I never have to come back for another surgery again? Should I just go back to the first surgeon and present the case again (he seems to be spot on with things)? Is a more aggressive form of PT (3x a day instead of 2-3x a week) going to help?

Sorry for the long post but wanted to get a nice history out there. Hopefully someone can suggest something for me here.

P.S.
The weight gain post op has been horrible. From 178lbs to 250lbs in almost 2 years time. Unfortunately I can't work it off because of the way I feel.

If you were linking to your images they didn't post.
New members are restricted from linking for a short time..
If you can attch any of written MRI reports, those might be better for us to help with.

I guess I have more questions for now..

I see you work from home , so I'm guessing at desk with al lot of phone & computer use?
That can be a factor for neck curvature changes and arm pain.
Weight of head hanging out off of the neck for many hours and years.

Did any PTs or DCs focus on neck/head/shoulder posture?
Did they quiz you each session if things felt better or worse and adjust the treatment if needed?
Or did those feel more like generic cookie cutter PT/DC treatments and not focused on your specific needs?
If they are doing generic protocols vs specific treatments for you it will be much less effective..

Any mention of tight muscles, trigger points, soft tissue etc?
Any past whiplash or head/ shoulder injuries?

Often surgery can take car of mechanical issues, but pain & other symptoms might still remain...

If computer/phone /reading with the forward head & arm postures fits for you, I suggest exploring our TOS forum sticky threads to see if some of it might fit for you..
Trigger point information {TrPs} for short
DOCTORS & PTs List and saved PT info threads

It is possible to have a secondary factor along with the C spine issues..
There is also internal scar tissue that some have more problems with from injuries or surgeries...

You can also use the search tool on our site to find specific keywords in past posts.

Ahh did not know that! Too bad because those images sure do reveal quite a lot. Am I able to post a link to them without making them an image appear on the post? That may help. Like can I "insert hyperlink" instead of "insert image"?

As for working from home. Yes on desk a lot with computer use but only phone use is through the meetings we have on our laptop. I have a set up at home that's comfortable enough that I don't need to bend/look down. Basically got myself a stand up set where, even if I'm sitting, I'm looking straight at the laptop. Any talking I do is through my laptop's speaker phone and works great.

DCs were useless. PTs however, were amazing. I became friends with them all over the years. They focused on anything and everything I brought up and any little issue I had, they would adjust the PT as necessary based upon my case. They were very good at reading the images too. So much so that they said "Had you presented this to us at the first PT session, we would have turned you away and told you to get surgery" and "I have never seen an MRI that bad before"

The PT only took me so far, plus insurance runs out at some point during the year at the end of the year The last PT session, I felt like I went a month longer than I probably needed to, though I cut it back to once a week. At some point, I stopped feeling any benefit. and figured that was the most I was going to get out of it.

I will definitely give the TOS a look. I'm a quick healer. I actually had zero issues post op like people typically do (tight muscles nope, swallowing problems nope, scar healed quickly and no post-op pain so I didn't need meds).

As for other factors, maybe my TMJ/Jaw Issues but everything came out at the same time and I'm in the process of getting this re-addressed again and it's much better than before.

I legit feel like something is "loose and broken" on the right side of my neck more upper cervical, that is why it concerns me.

One example of such, when I tried an exercise with a "shake stick" at my PT, on the left side I felt absolutely perfect. On the right side, I felt like something was loose and shaking around and the pain at the upper cervical was unreal that I had to stop the exercise and tell my PT that I was not continuing on with that after one session.

There is a size limit for attched images, often posted images are too small to clearly see details..
https://www.neurotalk.org/faq.php?fa...b3_attachments

If you scroll to the bottom of this page related past posts will show..

Hi
If you have the images downloaded to your computer, you can upload and attach them to your posts here.

You will see the ATTACH FILES option in the options below the posting box

Let me give that a shot with the reply here. Doesn't look like I can edit my prior post but here it goes.. looks like I can only do 5 files at a time soooo... here's the first set I guess.

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Here's the 2nd set which includes 3 months Post Op ACDF and then 2 weeks post op ADR (May/June 2021)

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This should be the last set.. 2 week ADR and 3 month ADR

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I forgot to add this 2 Week ADR view as well. Let me know if none of these are acceptable, if you want me to upload a different way... I could also add my reports but I may need to edit them so I don't include personal info.

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Ok, I am replying with my 2 MRI reports.

One from February 2020 (Thought it was January but it's February) before my ACDF and one from December 2020 5 months post-op ACDF.

Unfortunately my latest X-RAYS were directly from the Orthopedic Doctor and they gave me zero indication of a report and only went over the images with me in the offense and sent me off with a disc with images and no radiologist reports (I may ask them to send me the reports now since it's been a few months and that should be there).

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