Struggling to decide whether to go ahead with revision surgery

[Dxstructi0n]

Hi everyone, so like the title says; I’ve got a difficult decision to make in regards to what action I should take with the issues that I’ve been facing with my back. I had my original surgery in 2015, I was 15 at the time, I am now 25 (I’ll try to add photos of pre and post op X-rays) I had a pretty bad curve but all in all, my recovery was pretty smooth (it wasn’t a pleasant experience by all means but I know a lot of people have had issues) I have been experiencing pain at the top right (basically around/under my shoulder blade) most times when I bend/lean down e.g grabbing something off of the floor, it is when I try to return to an upright position I get excruciating pain (it’s like something is being pinched, a nerve maybe?) which leaves me sort of locked into place whilst I try and roll my shoulders around to somewhat untrap whatever is pinched and then I can return to normal, this doesn’t happen constantly but it does happen quite often and the pain can be that bad that I can’t help but shout out in pain. I also had an incident last month when I got into my boyfriends car; I had an excruciating pain shoot up from the lower left side (this is the exact spot that I have a loose screw) which left me unable to walk/move without intense pain for over a week. My consultant told me that this particular screw has completely pulled out and it essentially just “pistons” in and out of my back (I can feel it prominently under my skin and can feel like a grinding and popping sensation when I move, this is not painful) whilst I had this incident however, I could no longer feel the screw under my skin, my consultants opinion was that it had gotten stuck in and tore muscle and now it’s gone back into place again (I can feel it again now) from my most recent X-ray in July it has been determined that I have quite a few loose screws, but most notably a couple at the top that have breached my spinal canal and are close to my spinal cord, my spine has also started to recurve in the 10 years since my original surgery. I’ll add my consultant letter as that explains my situation better than I can but I’m just conflicted in what is the best/safest thing to do, I am petrified of the thought of something going wrong in surgery and being paralysed but I know if I leave it how it is, there’s also a chance for that to happen if those screws get to my cord. He seems convinced if we just take all the rods and screws out that it will recurve so the other option is to take it all out and then put it all back in again which I feel in my heart is the best thing to do, but at the same time, I’m too scared to go ahead with it right now because of all the risks. I’m just seeking some advice on here if anybody else has had a similar revision and can give me some more insight.
July 2022 X-ray: B6D95CA0-8497-4D57-93C3-A2D0D2044389.jpg
2015 Post op X-ray:72754D0F-431C-4C9F-832E-A549C81220A7.jpg
2015 Pre Op X-ray:62EA671B-9187-49BE-94D6-A611A32EE819.jpg
Notes from my spinal consultant: 66C64E15-7A0F-4829-94C4-2867A17CB902.jpg

[jackieg412]

I am not sure what you mean by consultant. But I good idea would be to go to a large medical facility for a second opinion. Neurosurgery or orthopaedic would be your choice.
Second and even third opinions are a good idea.

[Dxstructi0n]

I am not sure what you mean by consultant. But I good idea would be to go to a large medical facility for a second opinion. Neurosurgery or orthopaedic would be your choice.
Second and even third opinions are a good idea.

Sorry I’m in the UK, the Spinal Consultant I spoke to/who I’m under care with is who’ll be performing the surgery (if I go ahead with it) this was at large hospital with a big spinal unit - sorry for any confusion!

[susancook]

Hi there! The decision on whether to have any surgery or revision is a somewhat calculated risk/benefit. There are 3 possibilities: your pain will increase, your pain will stay the same, or your pain will decrease. The list of possible bad outcomes is daunting! Most of us ignore the possibility of a bad outcome. I personally won the lottery on bad outcomes: ventral/incisional hernia, pulmonary embolism, broken rods x 3, and t3,4 partial spinal cord injury. I currently use a wheelchair or forearm crutches for mobility. And now if you are still reading this, you are probably wondering if I regret having the initial surgery....No, I am happy that I had the original surgery and weathered all of the bad outcomes. When I had the original surgery I was in moderate to severe pain. I took Oxycodone on a daily basis. I asked one of the surgeons that I consulted how he saw me in 5 years if I elected not to have the surgery. He said that I would be permanently in a wheelchair.

My diagnosis was Adult Degenerative Scoliosis. I believe that I have 4 cages of rebuilt vertebrae. I have some pain, but it is tolerable. I will be 76 this month. I remain in the Mainstream of Life!

I suggest that you choose an orthopedic surgeon who has done a spinal fellowship and devotes most of his surgery as a Spine Surgeon.

Susan

[jackieg412]

It was good to see a post from you Susan. Also the encouragement you presented. I've had my share of complications. Of course, the worst one for me was an accident.
The others can be managed.

[LindaRacine]

Hi everyone, so like the title says; I?ve got a difficult decision to make in regards to what action I should take with the issues that I?ve been facing with my back. I had my original surgery in 2015, I was 15 at the time, I am now 25 (I?ll try to add photos of pre and post op X-rays) I had a pretty bad curve but all in all, my recovery was pretty smooth (it wasn?t a pleasant experience by all means but I know a lot of people have had issues) I have been experiencing pain at the top right (basically around/under my shoulder blade) most times when I bend/lean down e.g grabbing something off of the floor, it is when I try to return to an upright position I get excruciating pain (it?s like something is being pinched, a nerve maybe?) which leaves me sort of locked into place whilst I try and roll my shoulders around to somewhat untrap whatever is pinched and then I can return to normal, this doesn?t happen constantly but it does happen quite often and the pain can be that bad that I can?t help but shout out in pain. I also had an incident last month when I got into my boyfriends car; I had an excruciating pain shoot up from the lower left side (this is the exact spot that I have a loose screw) which left me unable to walk/move without intense pain for over a week. My consultant told me that this particular screw has completely pulled out and it essentially just ?pistons? in and out of my back (I can feel it prominently under my skin and can feel like a grinding and popping sensation when I move, this is not painful) whilst I had this incident however, I could no longer feel the screw under my skin, my consultants opinion was that it had gotten stuck in and tore muscle and now it?s gone back into place again (I can feel it again now) from my most recent X-ray in July it has been determined that I have quite a few loose screws, but most notably a couple at the top that have breached my spinal canal and are close to my spinal cord, my spine has also started to recurve in the 10 years since my original surgery. I?ll add my consultant letter as that explains my situation better than I can but I?m just conflicted in what is the best/safest thing to do, I am petrified of the thought of something going wrong in surgery and being paralysed but I know if I leave it how it is, there?s also a chance for that to happen if those screws get to my cord. He seems convinced if we just take all the rods and screws out that it will recurve so the other option is to take it all out and then put it all back in again which I feel in my heart is the best thing to do, but at the same time, I?m too scared to go ahead with it right now because of all the risks. I?m just seeking some advice on here if anybody else has had a similar revision and can give me some more insight.
July 2022 X-ray: [ATTACH]2109[/ATTACH]
2015 Post op X-ray:[ATTACH]2110[/ATTACH]
2015 Pre Op X-ray:[ATTACH]2111[/ATTACH]
Notes from my spinal consultant: [ATTACH]2112[/ATTACH]

Hi...

I understand your concern. You have to decide if you can live with the pain you have. It's possible that the pain will subside on its own, but it's also possible that it will get worse. While revision surgery isn't a slam dunk, it seems that most of us describe it, and the recovery, as being much easier than the original surgery.

I noticed that your upper thoracic area is moved significantly to the left. It seems to me that that might cause some of the problems you describe.

Best of luck with your decisions.

Regards,
Linda