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Thread: Struggling to decide whether to go ahead with revision surgery

  1. #1
    Join Date
    Jul 2022
    Posts
    2

    Struggling to decide whether to go ahead with revision surgery

    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
    Last edited by Dxstructi0n; 08-09-2022 at 01:24 PM.

  2. #2
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,113
    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.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  3. #3
    Join Date
    Jul 2022
    Posts
    2
    Quote Originally Posted by jackieg412 View Post
    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!

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,611
    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
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

  5. #5
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,113
    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.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,231
    Quote Originally Posted by Dxstructi0n View Post
    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
    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
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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