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Possible reassurance for those facing full cervical fus

Started by lostto on 09/20/2020 3:15pm

Ive been meaning to post this for 2 yrs. I searched all over the net for anecdotal info on people having full C2-T2 fusions when I was facing one myself. There was almost nothing. The one gentleman who did post reassured me it is possible to have a good quality of life after.
I had a mess of a neck from degenerative changes. My neurosurgeon just shook his head a declared it the neck of an 85yo, tho I was 58. I had severe stenosis and cord impingement at all levels, but worst at C2 and C5-6. I also had foraminal stenosis at all levels, both r and l. I took a heavy toy Tonka truck to the face, swung full force by my huge 2 yo grandson and it sent my C5 into retrolisthesis, All bad, all scary and massive repair needed. I couldn’t believe my NS proposed a full level fusion but also 360- anterior and posterior. He said I’d have maybe 15 degree range- barely any. A permanently “frozen” neck. I was horrified. Only slightly less so than complete paralysis if I had no repair.
Complicating factors were worse...I have very very severe asthma, and found during this process I also have very severe traceobronchomalacia, or an unstable floppy windpipe.i can’t seem to manage a mild anything. So trying to even get such a scary surgery was nigh impossible- the NS and pulmonologist just didn’t think I’d make it and if I did they doubted I’d heal. I intermittently have to take massive amounts steroids and that makes the new bone formation impossible. I gradually deteriorated while in the hospital for months trying to improve respiratory-wise so I could have surgery. I grew so weak I’d get trapped under blankets and couldn’t hold onto anything. They scheduled and cancelled several x and then proposed giving up. I’m a nurse of 30 yrs and I’ve seen pts slowly suffocate from weakened respiratory muscles. I knew I’d be dead in 2 yrs and helpless otherwise. I made impassioned, heartbreaking pleas that they couldn’t just leave me to that. Whatever would happen during or after surgery couldn’t be worse, so why not make the attempt? They finally did it. I’d developed such a thick fat pad to the front of my neckfrom all the steroids that he needed to do a posterior fusion, C2-T2+ laminectomy t2-3.
So it was done in 2018. I’m happy to say I had no catastrophic consequences and am leading aprety normal life with regards to movement. The steroids have slowed healing so I’m not done get. Covid hit at the time I was to get my 24 mo check, and now my NS no longer takes my insurance, so I need a different surgeon for my final surveillance checks. Having a really good NS was key. I canvassed the physical therapists, my primary and the ortho referring...”who would you...”. I kept getting the same name, and he is very skillful.
I have permanent arm weakness, they’re about 75%. Way way better than none. My legs are normal. When my neck is tired I can get wonky balance and feel like gravity is10x normal. It never lasts more than a few hrs. I do pretty much what I used to except lift heavy things or stuff that takes real balance and strength. I can’t climb up and down trails to the pocket beaches I’ve loved but there’s lotsa beaches with leveller approaches I can go to. I have much better than 15 degree movement. I can’t tip my head back for eye gdrops or to rinse in shower- I have to lean my whole back. I work full time at a desk job. Pays just the same as running around an ER.
That would be my #2 key- focus on what u do have vs any losses. You can learn to enjoy any new normal if u let go of expectations that everything will be perfect.
So if u r going for a many level or full length fusion, take heart. You can have a good quality of life after. Oh, and I’ve been incredibly lucky as re to pain-it was managed postop with meds but pain has not been a prominent feature of my case. A recent bout of sciatica taught me all I ever wanna know re nerve pain. It’s terribly debilitating and gave me a true taste of what others live daily. Had it continued I’d resolved to see a pain mgmt clinician and come up with a many-intervention plan to cope.

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