Hi,
I’m new to this forum & I’d love to hear from anybody regarding my current situation!
I’m 30 years old & was diagnosed with scoliosis aged 14. At the time I had a right thoracic curve & a left lumbar curve of approx. 40 degrees each. I saw Nigel Henderson based in Buckinghamshire originally, who was anti surgery, as he felt that I was young & if I were to be fused, due to the nature of my compensatory curve, the fusion would be significant & would impact my life quite dramatically. I was flexible & also in no pain. I wore a brace for a period to halt (although I hated it & did not wear it for the 23 hours a day that I was advised!) & he said I was to be monitored every year. I went to see him over the next 5 years & he did not seem to think there were any dramatic changes in my curves. Towards the end of this period, my curves had progressed to around the 47 degree mark & he said that it was likely now they’d continue to progress & still advised monitoring.
At 19 I moved to Bristol, & decided to seek a 2nd opinion. Although I was still not suffering from pain, at least nothing significant, I was extremely self-conscious about how I looked. I wanted to see if another consultant would have a different view regarding scoliosis surgery. I saw Mr. Ian Nelson over the next 4 years. After the 4th visit (aged 25), he concluded that my curves had progressed to around the 50 degree mark now & I also had some degenerative changes at L3/4, however, after asking me about my pain levels, which were still not significant & also carrying out a few flexibility tests, he concluded that he’d not recommend surgery as although my curves were at the stage where they would progress by 1-2 degrees every year, the fact that I was in almost zero pain & my flexibility was good, & that if he went ahead with surgery it’d be almost a complete spinal fusion, meant he felt the risks of surgery & limitations I’d have post surgery, outweighed the benefits. I left feeling extremely deflated as my main issue was my appearance & self-image & I was desperate to have a straight back! He said it was my decision, but he’d recommend waiting. My feelings were that no matter how much I hated how I looked, imagine if I went ahead with surgery & the worse case scenario happened, how would I forgive myself? So he told me I could keep monitoring it but less frequently.
Once I left uni, I started a job as an Events Manager & the next five years were extremely busy, travelling all over the world running events... time flew by & I never returned to see a specialist during that period. However, in the back of my mind I knew my curves were progressing & that surgery would be inevitable some day.
In January of this year I returned from Sydney Australia where I had relocated with work. Things were not working out so I made the decision to move back home. Over the last 5 years I could tell my scoliosis had worsened, purely from my physical appearance - my torso was shorter, my rib humps bigger & my rib cage at the front was protruding further than it had been, so I took the decision to go & see a new specialist now I was back at home. I did some research & came across a blog by a girl called Christina who had had scoliosis surgery performed by Mr Stewart Tucker, & had had a great experience with a successful result. I then did some further research & found the following article http://www.dailymail.co.uk/health/ar...hemselves.html also highlighting Mr Tucker as one of the best. So I was referred by my GP, & my first appointment was in April of this year at the Royal National Orthopedic Hospital in Stanmore.
I must state at this point, I’ve been under Mr. Tucker for the last 6 months, however I’ve not yet met him in person. I’ve met every member of his team, from his consultant physio to his registrar to his locum consultant, who have all told me slightly different prognoses.
First, the consultant physio, Susanne, on looking at my X-rays & briefly leaving the room to discuss my X-rays with Mr Tucker, told me that my curves had progressed to 60 degrees each & I definitely needed an operation. She said I would have to undergo 2 separate operations. The 1st (anterior), where they’d go in through my side - to release some discs & de-rotate my lumbar spine as in addition to the lateral curvature I also have rotation of the lumbar. For this they’d have to collapse my lung & then I'll be in recovery for a week before the next operation. The 2nd operation (posterior), where they’d go in with a straight incision down the middle of my back & straighten the spine with pedicle screws & 2 rods, & I’d be in hospital for another week or two in recovery before going home. She went on to say he’d fuse my spine from T4 to L4. The reason they had to go down to L4 was due to an apparent lysthesis between L3/4 & the degeneration also present on this disc.
The next visit I saw his registrar (as Mr Tucker had been called away on an emergency) & he had told me the same thing but was more positive about the prognosis saying that it would not seriously affect my ability to do anything in my day to day life. On the last visit, once again Mr Tucker had been called away on an emergency, so I saw his locum consultant, Mr Prasad, & he then told me that if it were he doing the operation he’d only go down to L3 to allow me more flexibility/mobile discs in my lumbar spine. I was over the moon at this news however, because of all the discrepancy & also because I did not feel comfortable having not met with my specialist at least once, & it was now 10 days before proposed surgery (this coming Tuesday 16th October 2012), I wrote an email to Mr Tucker explaining the situation & that I wanted to meet him in person before my operation. He emailed back apologising for the fact that we had not yet met & that it was not usual practice. He said he’d call me on Thursday night (last Thursday) to discuss the operation & any concerns I had & would then come & meet me in person on Monday night in hospital before my op on Tuesday.
I was very happy at this stage, as I had been anxious & the differences in opinion had been very disconcerting, so I felt that shortly he’d give me peace of mind about what was happening. However, when I spoke to him on Thursday he came back with a worse prognosis. That he had looked at my MRI & because I’ve a degenerative L3/L4 disc & there are also some degenerative changes with L4/5 that he’d recommend fusing down to L5 but this would have a significant impact on my flexibility. He said I’ve 2 choices; to have it now or wait until my condition worsened i.e. until the curves progress (he estimates 1-2 degrees per year) & the pain increases to the point where I can't take it any longer, & at that point have surgery, so that at least I would have more time with a flexible spine. I told him what Mr Prasad had said about preserving L3/4 & L4/5 & he said that he felt that L3/4 was quite degenerate & his fear would be that I would be back in as little as maybe 2 years with complaints of pain & they would have to extend the fusion anyway.
As you can imagine, this was a shock & I was very upset. Not only was it another different prognosis - it was worse! 6 months ago I started mentally preparing for surgery, from the moment his physio ducked out of her room with my X-rays & came back minutes later saying that Mr Tucker had seen my images & definitely advised surgery, & now he was saying that I’ve the option of waiting!
The thing is I do not suffer from chronic pain due to my scoliosis. As the curves have increased the pain has worsened but I’ve never taken painkillers consistently for any pain related to my scoliosis, only if I’ve a particularly bad day. At the moment I’m able to do anything I want, although I’m definitely not the most active of creatures! I don't practice regular sport & am not a member of any sports teams or anything like that. I go to the gym occasionally (very occasionally!) & I like swimming. I also want to have children some day (hopefully not too far down the line!). What I’m trying to work out is the impact this operation will have on my life if I choose to go ahead with surgery now. Will it stop me doing anything I already do in my day-day life or want to do in the future? & will the difference in my limitations be significant if I’m fused to L5 as opposed to just L4 or L3?
My gut tells me I should have the surgery now, get it out the way & get on with my life. I also feel if I wait until it worsens it will be harder to correct as I’ve heard the curves get stiffer as time goes on & are harder to correct the worse they are? I’m also young & healthy now & risk having more complications if I wait until I’m older.
As it is, I’ve deferred my surgery until I’ve met with him & had a proper face to face consultation & until he has had a chance to properly familiarise himself with my MRIs. I’ve an appointment booked with him next Friday 19th October 2012, to discuss my options properly. I’m also seeking a 2nd opinion.
I think my main fear, aside from the risks involved in the surgery itself, is how the surgery will impact my mobility afterwards with the majority of my spine being fused.
Phew...Sorry for the essay! As you all know, this is big decision & just great to actually share with people who understand & have been through this surgery! Perhaps you could let me know how this operation has impacted (or not) your ability to do things. If you think it's worth waiting or biting the bullet now? Also if you know of anyone who has had degenerate discs or the beginnings of degeneration, opting to stop the fusion above those discs, in order to preserve flexibility, & gamble the possibility of having a second surgery later on?
Right, no more questions. Thanks for taking the time & hopefully hear from you soon!
Vic
x
I’m new to this forum & I’d love to hear from anybody regarding my current situation!
I’m 30 years old & was diagnosed with scoliosis aged 14. At the time I had a right thoracic curve & a left lumbar curve of approx. 40 degrees each. I saw Nigel Henderson based in Buckinghamshire originally, who was anti surgery, as he felt that I was young & if I were to be fused, due to the nature of my compensatory curve, the fusion would be significant & would impact my life quite dramatically. I was flexible & also in no pain. I wore a brace for a period to halt (although I hated it & did not wear it for the 23 hours a day that I was advised!) & he said I was to be monitored every year. I went to see him over the next 5 years & he did not seem to think there were any dramatic changes in my curves. Towards the end of this period, my curves had progressed to around the 47 degree mark & he said that it was likely now they’d continue to progress & still advised monitoring.
At 19 I moved to Bristol, & decided to seek a 2nd opinion. Although I was still not suffering from pain, at least nothing significant, I was extremely self-conscious about how I looked. I wanted to see if another consultant would have a different view regarding scoliosis surgery. I saw Mr. Ian Nelson over the next 4 years. After the 4th visit (aged 25), he concluded that my curves had progressed to around the 50 degree mark now & I also had some degenerative changes at L3/4, however, after asking me about my pain levels, which were still not significant & also carrying out a few flexibility tests, he concluded that he’d not recommend surgery as although my curves were at the stage where they would progress by 1-2 degrees every year, the fact that I was in almost zero pain & my flexibility was good, & that if he went ahead with surgery it’d be almost a complete spinal fusion, meant he felt the risks of surgery & limitations I’d have post surgery, outweighed the benefits. I left feeling extremely deflated as my main issue was my appearance & self-image & I was desperate to have a straight back! He said it was my decision, but he’d recommend waiting. My feelings were that no matter how much I hated how I looked, imagine if I went ahead with surgery & the worse case scenario happened, how would I forgive myself? So he told me I could keep monitoring it but less frequently.
Once I left uni, I started a job as an Events Manager & the next five years were extremely busy, travelling all over the world running events... time flew by & I never returned to see a specialist during that period. However, in the back of my mind I knew my curves were progressing & that surgery would be inevitable some day.
In January of this year I returned from Sydney Australia where I had relocated with work. Things were not working out so I made the decision to move back home. Over the last 5 years I could tell my scoliosis had worsened, purely from my physical appearance - my torso was shorter, my rib humps bigger & my rib cage at the front was protruding further than it had been, so I took the decision to go & see a new specialist now I was back at home. I did some research & came across a blog by a girl called Christina who had had scoliosis surgery performed by Mr Stewart Tucker, & had had a great experience with a successful result. I then did some further research & found the following article http://www.dailymail.co.uk/health/ar...hemselves.html also highlighting Mr Tucker as one of the best. So I was referred by my GP, & my first appointment was in April of this year at the Royal National Orthopedic Hospital in Stanmore.
I must state at this point, I’ve been under Mr. Tucker for the last 6 months, however I’ve not yet met him in person. I’ve met every member of his team, from his consultant physio to his registrar to his locum consultant, who have all told me slightly different prognoses.
First, the consultant physio, Susanne, on looking at my X-rays & briefly leaving the room to discuss my X-rays with Mr Tucker, told me that my curves had progressed to 60 degrees each & I definitely needed an operation. She said I would have to undergo 2 separate operations. The 1st (anterior), where they’d go in through my side - to release some discs & de-rotate my lumbar spine as in addition to the lateral curvature I also have rotation of the lumbar. For this they’d have to collapse my lung & then I'll be in recovery for a week before the next operation. The 2nd operation (posterior), where they’d go in with a straight incision down the middle of my back & straighten the spine with pedicle screws & 2 rods, & I’d be in hospital for another week or two in recovery before going home. She went on to say he’d fuse my spine from T4 to L4. The reason they had to go down to L4 was due to an apparent lysthesis between L3/4 & the degeneration also present on this disc.
The next visit I saw his registrar (as Mr Tucker had been called away on an emergency) & he had told me the same thing but was more positive about the prognosis saying that it would not seriously affect my ability to do anything in my day to day life. On the last visit, once again Mr Tucker had been called away on an emergency, so I saw his locum consultant, Mr Prasad, & he then told me that if it were he doing the operation he’d only go down to L3 to allow me more flexibility/mobile discs in my lumbar spine. I was over the moon at this news however, because of all the discrepancy & also because I did not feel comfortable having not met with my specialist at least once, & it was now 10 days before proposed surgery (this coming Tuesday 16th October 2012), I wrote an email to Mr Tucker explaining the situation & that I wanted to meet him in person before my operation. He emailed back apologising for the fact that we had not yet met & that it was not usual practice. He said he’d call me on Thursday night (last Thursday) to discuss the operation & any concerns I had & would then come & meet me in person on Monday night in hospital before my op on Tuesday.
I was very happy at this stage, as I had been anxious & the differences in opinion had been very disconcerting, so I felt that shortly he’d give me peace of mind about what was happening. However, when I spoke to him on Thursday he came back with a worse prognosis. That he had looked at my MRI & because I’ve a degenerative L3/L4 disc & there are also some degenerative changes with L4/5 that he’d recommend fusing down to L5 but this would have a significant impact on my flexibility. He said I’ve 2 choices; to have it now or wait until my condition worsened i.e. until the curves progress (he estimates 1-2 degrees per year) & the pain increases to the point where I can't take it any longer, & at that point have surgery, so that at least I would have more time with a flexible spine. I told him what Mr Prasad had said about preserving L3/4 & L4/5 & he said that he felt that L3/4 was quite degenerate & his fear would be that I would be back in as little as maybe 2 years with complaints of pain & they would have to extend the fusion anyway.
As you can imagine, this was a shock & I was very upset. Not only was it another different prognosis - it was worse! 6 months ago I started mentally preparing for surgery, from the moment his physio ducked out of her room with my X-rays & came back minutes later saying that Mr Tucker had seen my images & definitely advised surgery, & now he was saying that I’ve the option of waiting!
The thing is I do not suffer from chronic pain due to my scoliosis. As the curves have increased the pain has worsened but I’ve never taken painkillers consistently for any pain related to my scoliosis, only if I’ve a particularly bad day. At the moment I’m able to do anything I want, although I’m definitely not the most active of creatures! I don't practice regular sport & am not a member of any sports teams or anything like that. I go to the gym occasionally (very occasionally!) & I like swimming. I also want to have children some day (hopefully not too far down the line!). What I’m trying to work out is the impact this operation will have on my life if I choose to go ahead with surgery now. Will it stop me doing anything I already do in my day-day life or want to do in the future? & will the difference in my limitations be significant if I’m fused to L5 as opposed to just L4 or L3?
My gut tells me I should have the surgery now, get it out the way & get on with my life. I also feel if I wait until it worsens it will be harder to correct as I’ve heard the curves get stiffer as time goes on & are harder to correct the worse they are? I’m also young & healthy now & risk having more complications if I wait until I’m older.
As it is, I’ve deferred my surgery until I’ve met with him & had a proper face to face consultation & until he has had a chance to properly familiarise himself with my MRIs. I’ve an appointment booked with him next Friday 19th October 2012, to discuss my options properly. I’m also seeking a 2nd opinion.
I think my main fear, aside from the risks involved in the surgery itself, is how the surgery will impact my mobility afterwards with the majority of my spine being fused.
Phew...Sorry for the essay! As you all know, this is big decision & just great to actually share with people who understand & have been through this surgery! Perhaps you could let me know how this operation has impacted (or not) your ability to do things. If you think it's worth waiting or biting the bullet now? Also if you know of anyone who has had degenerate discs or the beginnings of degeneration, opting to stop the fusion above those discs, in order to preserve flexibility, & gamble the possibility of having a second surgery later on?
Right, no more questions. Thanks for taking the time & hopefully hear from you soon!
Vic
x
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