Hi, my name is Virginia, and I had a spinal cord injury(totally incomplete, T12, L1 and L2, at the age of 17. It was in 1980 and at the time they used those long rods to kind of fix your spine.
They fixed first time at hospital, from high at my upper trunk, till very low back. I believe they didn't know exactly what they were doing. I suffered the accident in a small town in the interior of Rio de Janeiro state, where I was spending a long weekend. Due to my injuries I couldn't be transported to Rio the Janeiro city, a huge city with lots of decent (private) hospitals.
I believe in this small hospital, they did the best they could or knew. I spent around 3 months in this hospital, then were transferred by helicopter to Rio de Janeiro's city to a kind of decent (private) hospital. Somehow, during the months after the rod being put, it got loose in the bottom, hurting even more my spine. Tgen, I don't remember well, they fixed it again.
Then, after almost 6 months in hospital and many surgeries I was finally discharged.
Being only 17 and have lots of cousins and the friends that were left ( some "friends" disappeared forever. Better this way, at least you know who is who! So I went on with my life, with a very straight trunk due to the rods. While they fixed mu spine alright I also used a kind of "vest" made of leather and metal in the back, being closed and adjusted in the front, with some "buckles", as we do with a vest, as if there were some belts closing in the front. Sorry, but it is kind of hard to explain it well in English. I did everything with this "iron and leather vest". Went to school, physiotherapy, the works. Being then 18 and young and wanting to enjoy life every way I could, one day I went with cousins and friends to bowling. In bending to throw my ball, "something" got loose up my spine ( where I had no injury, but where the top of my rod was fixed. To make an even longer (LOL) story short, I ended up having my rods ( one on each side of my spine) removed.
I believe the bone "insert" taken from my hips was probably healed because I lived very well from then on with my spine having no fixation at all. For me, an 18 years old teen, was a relief.
At that time there wasn't any titanium screws fixation. Just the awful long rods, and they certainly hinder my trunk movements, specially when I transferred from my wheelchair to bed, car, toilet, etc...i am not a doctor, so I have no clue if your spine is healed enough to have the screws removed, but as a *paraplegic peer only* ( I am a lawyer so I know I could be in trouble for suggesting that, but I do it as a totally layman paraplegic peer, just sharing my experience, and sharing what was better for me ONLY, ok? I suggest you discuss with your surgeon (neurosurgeon and orthopedist surgeon). For me I felt free and with a way more comfortable "body" and spine and trunk, after my rods were removed. But this worked for my (very low) kind of injury.
Nowadays, 33 years after my accident, the lack of fixation and too much activity on my part ( what I don't regret not a tiny teeny weenie bit) is kind of affecting the moe ( not fixed spine), but this started about 30 years after my accident, 30 very healthy and active years.
So, I believe you and your doctor can reach an agreement, can't you? Remember that they are helping your body be well and YOU FEEL WELL AND READY TO FACE AND ENJOY LIFE. If the fixation of your spine is being like hell to you, consider it being "unfixed". I know it is not an impossible thing because I live without any fixation, but again, I don't know the "ins and outs" of your injury, need for fixation, etc...I just think, and this I say from my heart and based on my life and on what have enduring since I was 17, for the last 33 years of my life : being a paraplegic, having a broken/healed spine and living with the consequences of a spinal cord injury, incomplete, in my case, is A PAIN IN THE BUTT, and we don't need to live with more problems than those that we have to. That's the only reason I took the time to register, create a password, all those annoying things to which I have very little patience for, just to TRY TO HELP A PERSON WHO PROBABLY GO THROUGH MANY PROBLEMS LIKE THOSE I GO THROUGH AS WELL. And it is definitely hard, very hard. So if by any chance I might be able to alleviate ANY of your suffering, my friend, it will be worth all the pain I went through to post my two cents here. I sincerely hope it helps! And TO THE PEOPLE AT CHRISTOPHER REEVE FOUNDATION THAT MANAGE THIS POSTING PAGE: PLEASE CHANGE THIS FOR A BETTER ONE, LIKE THE ONE THEY USE AT AMAZON OR EBAY..,THIS ONE HERE IS VERY VERY DIFFICULT TO USE, WITH LOTS OF QUIRKS AND CAN REALLY CHALLENGE OUR PATIENCE, SPECIALLY OF A PERSON WITH A SPINAL CORD INJURY that feels pain 24hrs a day, every day, for the past 33 years. And please don't take the caps as screaming or anything of the sort. It was just to catch an administrator or the person who manages it. It was a challenge to post here and, hey, I am almost done! I hope it HELPS YOU STEPHANIE. Wishing all the best to you and your life, Virginia, from Canada. 😊