New member from NJ - Failed Mobi-C at C3-C4 (Looking for a revision)

[Danylko]

Hey All,

Thanks for the add here. I've been around some groups on Facebook and have talked to many surgeons but it's always a good idea to continue to pursue options, get opinions or just support in general. So consider this my long introduction!

I've been reading some of the threads on here before I was approved and must say, I'm sorry to hear about some of the journey most of you went through. I have similar stories but was reading one in particular on here that kind of hit home a little bit, expect my mindset is a bit different. Like that person, because of my neck, I am unable to travel. I can't even sit in a car because I am hypermobile and instable now (be it as a passenger or driver, it's the same result. An no neck brace can seem to stabilize this during my rides).

My story is a bit different though, as you can see in my signature, as I faced some pretty bad myelopathy at some point in 2020 that basically was leading me to the loss of feelings on limbs and was making it difficult for me to walk. This part was definitely resolved with the fusion, but lots of pain and instability still remained almost a year later so a different surgeon decided a on an ADR at C3-C4 which was pretty bad when he opened me up.

For the most part, my pain is resolved, but my cervical instability and now hypermobility remain... and mainly when seated, this being in a car or anything moving that I need to sit down is near impossible.

Anyway, I am 45 years old and my mindset now is "This has been going on for almost 10 years, enough of this, I'm done sufferent and I need a fix so I can go back to a somewhat normal life". I know, I know, easier said than done. I've actually documented a lot of my journey in vlogs on my YouTube channel so if you've see it, you can see I've remained positive this entire time.

So here I am, asking for any local suggestions to Hillsborough, NJ that supports ADR revisions (with potentially a different ADR). I already have talked to one out of state that has given me this, but flying to Texas is legit impossible when I can barely make it down the road in a car. I'm also set to see someone in NYC to set another option.

I'll probably share a bit more in another forum part of these forums where I can give some more images and history but consider this my long hello for now!

[Harrison]

Hi, thanks for posting. Sorry about your situation. Check out the topic in this page, 11-26-12 topic, and review the doctors carefully.

https://www.adrsupport.org/forums/sh...ad.php?t=11140

I would email and call the offices and inquire. If you get a no, ask for a referring surgeon that has performed ADR revisions. Dr. McAfee has performed many, as I recall.

Revisions are very complicated. If you can expand your pain management remedies and find more effective ones, that may help you travel further. This may help you considerably; not the least of which is the feeling of being “boxed in” to a particular doctor who you may not like for whatever reason.

[Danylko]

Originally Posted by Harrison

Hi, thanks for posting. Sorry about your situation. Check out the topic in this page, 11-26-12 topic, and review the doctors carefully.

https://www.adrsupport.org/forums/sh...ad.php?t=11140

I would email and call the offices and inquire. If you get a no, ask for a referring surgeon that has performed ADR revisions. Dr. McAfee has performed many, as I recall.

Revisions are very complicated. If you can expand your pain management remedies and find more effective ones, that may help you travel further. This may help you considerably; not the least of which is the feeling of being “boxed in” to a particular doctor who you may not like for whatever reason.

Thanks for this! This is very appreciative and I actually saw this list before I joined up because I wanted to see if I missed anyone closer to me. Amazing stuff here.

Yeah, I'm trying to think outside the box a little bit for the pain management. Thankfully it's not the pain more than it is the hypermobility... that is where the tricky part comes and no amount of PT has been able to help with that (ok maybe it helped slightly but that's it).

Anyway, going through what I missed here since I posted and reading other threads too to see what experiences folks are having. It's great to have a community like this where patients, and I'm sure to some extend even the doctors, can communicate!