I think we may be related ! I do not meet many people who have had almost the same amount of surgery that I did . My surgery was done about a year later than the surgeon wanted , bc I had an infection that was thought to be dessiminated . I was so sick up until surgery ; we hoped the infection was gone or I could be in bigger trouble than I already was .
I had become very weakened prior to surgery / the infection plus several other conditions made me feel so awful that by the time I had my surgeries I really couldn’t cognitively handle even what the details of the surgery entailed . I knew my chances of making it were slim due to all my issues . I had been inactive for so long and had endured so much to get to this point , I was just ready to do it . My biggest concerns post op were that I would be able to walk
better ,that my head and neck would be straightened back to normal placement and my newly developed urinary incontinence would be cured .
I had C3-C5 ACDF done first ; when I became aware of just being awake after surgery , I immediately knew the incontinence problem was over . I also was aware that the positioning of my head and neck was better . I recovered pretty quickly from that it seemed . I was pleased at the progress that had been made . I wore a collar /brace they went to my waist . I was still in a precarious situation until I had the rest of my cervical surgery done a month later. This part was more serious and took around 10 hours I think . I am a nurse practitioner and I was acutely aware of all the things that could go wrong , plus my surgeon had been very blunt that my surgery and /or recovery might kill me. I would say I was just more uncomfortable after the posterior surgery . (C2-T2) Because of my previous problems and still being on IV antibx ; I stayed in the hospital 2 weeks then I went to a rehab facility for two weeks. It was hard to be away from home but I needed the extra security so that I didn’t fall and I received intensive PT /OT . I had pretty extreme weakness of my upper body . Just lifting my toothbrush up and brushing for a decent amount of time was really hard for me . I prob developed some gingivitis during this time . The area around the incision was pretty numb but weakness just plagued me . I guess you could call it tightness too . My upper body would tremor like I was just exhausted when I tried to do anything. And everything involves your upper back and neck . However it just seemed like one day a few months later , I realized the strength was coming back slowly but surely . The tightness and just absolute weirdness that I felt in that area improved . Unfortunate Covid and a hip surgery complicated things and I lost some of the strength i had gained. I felt like I literally had been living under a dark cloud for years by then . Even though my therapy was delayed some , it seemed to be helpful that I went back even though it wasn’t a new problem / I just needed to get stronger and work on my wimpy upper body and just generalized weakness . I really noticed a change then and felt I had become a much stronger person . I remember thinking it had taken me 18 months to recover from they surgery . However I had very complicating factors that made my situation a disaster. But considering eveything going against me ; the surgery was a success . I would have liked to have returned to normal and been the old me , but that will never happen . My surgery was to save my life and prevent paralysis .
I don’t know about you or anyone else reading this , but I was misdiagnosed and looked over for years while I endured terrible pain , brain fog , and proximal weakness of my body . It was like no one would listen to me . My surgeon said it was something like RA had eaten up my spine. My family and I had moved during the start of this nightmare and that also created more confusion and no communication from my caregivers . I remember when I started to realize that I was being tagged as a nutcase - and yes , that description was correct bc by this time I had caused a huge disruption in our family life , lost my career , caused great financial distress with all the medical bills and the lack of my salary . I was also on steroids which was the only thing that touched my pain but it made me less then nice , you might say . I think the hardest thing about this has been the lack of time specialists spent with me and the time that was lost while I was trying to get someone to listen to me . Then I am referred to this orthopedic spine surgeon by accident / I was supposed to see an orthopod who specialized in feet - anyway he became my doctor and was I surprised when he told me how serious my situation was . How I got to that point I do not know how , and I ask myself every day how this happened and here I was a NP and I could not get help .
Could I ask you or anyone reading this ….what kind of shape are you in now ? What activities do you do ? Just fill me in on your story whoever is reading this . I literally have not known a soul who has gone through what I have !