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Thread: My dilemma...HELP! :)

  1. #1
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
    Posts
    15

    My dilemma...HELP! :)

    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

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,957
    Hi Vic...

    Welcome to the forum. I'm sorry that you're going through such anxiety. I definitely understand.

    Here's a publication on the subject of lumbar mobility in long fusions:

    http://www.ncbi.nlm.nih.gov/pubmed/21959839

    I was fused 20 years ago, from T4-L3. While it definitely limited by flexibility somewhat, I could still do pretty much anything I needed. The only time I was really aware of the difference was when I did something like trying to put pantyhose on. Then, about 15 years ago, I started having low back pain again. Xrays showed that my L3-4 disc was degenerated. I started physical therapy, and pretty much was able to live with the pain for the next 8 years. At some point during those 8 years, I had more xrays and saw that the L4-5 disc space was also degenerating. The writing was one the wall. I would have liked to do something at that point to keep from having to have L5-S1 from having to be fused, but the odds were against that. Sure enough, I started having more back pain as well as leg pain. So, at the beginning of last year, I had the fusion extended down to the sacrum. While I'm absolutely delighted to be out of pain, there's not a day that goes by that I don't wish I never had to have a fusion.

    I know an extraordinary number of people who have long fusions to L5 or S1. There seems to be a fairly large range of stiffness. I think it may depend on how thin one is and how flexible one's hips are.

    With all that said, I can do most of what other people can do. The limitations I have are that it's difficult to put socks on my right foot without an aid, and it's difficult to get from a standing position to the floor and back again. Once I'm on the floor, the only way I can sit is up against a wall. I've definitely come to understand that "necessity is the mother of invention". It seems there's always a way to get something done.

    On another subject, I hope you know that a long fusion to L5 is fairly likely to need extension to the sacrum at some point in the future. Here are some papers that should be of interest:

    http://www.ncbi.nlm.nih.gov/pubmed/18007259
    http://www.ncbi.nlm.nih.gov/pubmed/17556129
    http://www.ncbi.nlm.nih.gov/pubmed/19292943
    http://www.ncbi.nlm.nih.gov/pubmed/19165507

    I hope you can find some peace prior to your surgery. These are horrible decisions we all have to make, but in many cases, we have to make the choice between surgery and disability.

    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

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Welcome to the forum. You say your gut feeling is to go with surgery now and get it out of the way. I think that's quite reasonable given your curve is increasing, which makes for a bigger surgery in the future with probably a lesser correction. As someone fused to sacrum I think the flexibility issue is less of an issue than the need to stop progression and prevent future pain. Like Linda, I can do anything I want, albeit some things are done differently. I tend to use my knees more than I did, to bend and occasionally, like the other day when I dropped an earring back on the tiles, I had to get down on my hands and knees to find it. But I feel this sort of thing minor compared with the spectre of increasing deformity and pain. The other aspect is your desire for children. There are many on this forum who've had the surgery with 2 or 3 small children at home, and that's hard. Your degeneration is another reason. It can only get worse. If I were you, I would be ensuring the fusion goes low enough to take care of that. The loss of flexibility is minor compared to the pain you are likely to suffer with those degenerating discs.

    Just my opinion, and I hope you get lots more opinions, to think about. Good luck!
    Jen
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  4. #4
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Welcome to the forum. Hopefully, someone closer to your age will respond. I was 60 when I was fused T4 to sacrum, although in minimal pain. I am actually still estatic that I had the surgery, for a couple of reasons: I have returned to almost all of my presurgery activities, including golfing and tap dancing (my signature has a video of my first day back to golf after waiting over a year), my recovery was easier than I anticipated, the curve, hopefully, will not progress, and I am straight and tall without my rib hump of which I was extremely self conscious as well as my "old lady" posture. It's a tough decision as to when the time is right. I think you will feel better after your appointment and if you get a second opinion. Good luck!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  5. #5
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
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    Thank you so much for the warm welcome and for all your replies. It is very encouraging to hear that generally, although you have to adapt, that even with fusion to the pelvis you are able to enjoy normal every day activities...

    Karen, I just read through these posts with my Dad who is also a keen golfer and he was very impressed with your swing! That's amazing, you really would not have a clue that you were fused that far.

    Linda, thank you for your feedback and the links...very helpful. It is interesting that you say with a long fusion to L5, that it's likely to need extending to the Sacrum eventually. If this is true, and I would likely need two surgeries any way, I feel more inclined to take a gamble and only fuse down to L4 on the initial surgery. This would take care of my most degenerate disc and listhesis but also preserve more flexibility. If I'm not suffering from significant pain now and I already have degenerate discs then perhaps they would cope better under the slightly shorter fusion, especially as L5/S1 is healthy at the moment and I may not need another surgery at all (Probably wishful thinking). Obviously, I will need to discuss this with the specialists!

    Jen it is encouraging to hear that you feel loss of flexibility is a small price to pay for the potential pain I may suffer in the future. I sometimes feel that if I was in a huge amount of pain the decision would be far easier to make, although I can imagine it is not a nice position to be in at all.

    I have just booked a private consultation with Mr James Wilson Macdonald at the Manor Hospital in Oxford for this Wednesday, so I will get my second opinion before I see Mr Tucker in clinic on Friday for our consultation. Will be very interested to see what he thinks also!

    Anyway, thanks again and I'll keep you posted on progress!

    Vic
    30 yr old, Adolescent Idiopathic Scoliosis, Dbl compensatory curve, diagnosed age 14
    Rt Thoracic approx 60 degrees
    Lft Lumbar approx 60 degrees
    Proposed 2 stage A/P fusion T4-L4 or L5 (TBC)
    Consultant - Stewart Tucker, RNOH
    Seeking Second opinion - James Wilson Macdonald, Manor Hospital, Oxford
    Love my friends, family, the island of Mallorca, and eating great food!
    My Pre-Surgery X-Rays
    (Front Xray) http://i48.tinypic.com/mvlusw.jpg
    (Side Xray) http://i48.tinypic.com/s2f6na.jpg
    Last edited by PollensaGirl; 10-15-2012 at 10:31 AM.

  6. #6
    Join Date
    Apr 2012
    Posts
    83

    Welcome!!

    Hi Vic, welcome to the forum.
    Our X-rays look almost identical but I had twin 50's. I chose to have surgery now (29 years old) im 4 weeks post-op instead of later because thy could (hopefully) preserve a few levels of my spine by Doing it now. I am only fused t4 to L1. I can't speak for being fused lower and flexibility because I have been able to maintain the flexible parts of our spines... That being said there is a blog that I was following of a young woman 29ish who was fused to l4 and is doing wonderfully! (I will check for her blog and pm you)
    AnywAy- my two cents:
    I would def get another opinion
    If you're not in any pressing pain and you're still not sure... I would use this time to get your body as healthy (go to the gym) and FLEXIble as possible while u wait.
    The only suggestion to do now rather Than later is better correction (spines get stiff as they get older) and quicker recovery. Well if you used this time to really work in your overall health and keep your body flexible you wouldn't need to have surgery right away. ...
    I am extremely lucky as I have had a relatively "easy" recovery. But I also am not fused very low and I think that has a lot to do with it.
    I think you need to meet the RIGHT surgeon, someone that listens to your concerns and then go with what your gut is telling you.
    Insurance - is it a good time for insurance purposes and time off work/life etc right now
    Good luck and feel free to ask me anything as it's all still very fresh in my mind!

  7. #7
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Hello there,

    I've gotta chime in here with a slightly different opinion. I had a 55 degree lumbar curve at age 30 and was advised to have surgery. I chose to wait until after I had children because I was not in significant pain. I then had surgery earlier this year at age 40, with an 80 degree curve. I am extremely glad I did not have surgery before I had my children. I can't imagine lifting them in and out of a crib, high chair or car seat now, let alone playing with them on the floor. Even nursing would be difficult, as I can't lean back in a comfy chair. Also, you do run the risk that your pain will be WORSE after surgery. It definitely will be worse for some months, and unfortunately there are complications that can make pain permanently worse. I am currently in limbo because my pain is worse, and I am 7 months post-op. I still hope it will go away, but there's always that question--what if it doesn't? I didn't absolutely have to have the surgery from a pain perspective, at least not yet.

    Now, on the other hand, if your surgeons think you can get away without fusing your lowest levels by having surgery now, then I'd go for it. It seems anecdotally that the people with worst flexibility issues are those of us fused to S1. Some of the things I can't do comfortably at this point include: driving a car, sitting on anything soft, sitting at all for more than an hour, walking fast, putting on socks and shoes, loading the dishwasher, doing laundry, vacuuming, picking up toys off the floor. You get the idea. Now, I am only 7 months post-op, so hopefully those things will improve, but it's hard to know for sure.

    You are doing the right thing by doing your research and thinking through all of your options. If you do decide to have surgery, I hope you will seek out an outstanding physician--even if you have to travel for him/her.

    Best wishes,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  8. #8
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Vic--
    It is a very difficult decision. I can echo most of what Linda and Jennifer said as far as flexibility at 3 1/2 years out. My decision was made to have surgery at 57 since I couldn't deal with it any more. I did everything I could to avoid it. My recommendation is definitely get a 2nd opinion. Good luck and welcome. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  9. #9
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
    Posts
    15
    King, Evelyn, and Janet! Hi and thanks for your posts!

    King - congrats on being 4 weeks post surgery! Great to hear your recovery is going well. Looking forward to getting a second opinion this week and then meeting Mr Tucker also (finally!) on Friday! I have heard lots of great things about him - think he is a victim of his own success, that's why he struggles to see all his patients but at least I know he is one of the best and I'm glad I have pushed for a consultation with him personally. If you are able to find the blog of the girl who is a similar age to us who is fused to L4, I would love to read it!

    Janet - it's encouraging to hear that you feel the same as Linda and Jen with regard to the flexibility side of things. How are you getting now with everything else? Pain etc? How far down are you fused?

    Evelyn - thank you for providing an alternative view and giving me an insight into how you cope with day to day activities and parenting with a long fusion...unfortunately, I fear that the highest possible level that they will stop my fusion is at best L4 and worse L5 at this stage. I think if they told me L3, it would be a no brainer for me to go ahead now in my eyes, but with the longer fusion being proposed I am just trying to weigh up the costs versus the benefits.

    Anyway, by the end of the week I should have gathered as much info as I need and be in a better position to make my decision.

    Thanks again everyone!

    Vic
    x
    Vic
    30 yr old, Adolescent Idiopathic Scoliosis, Dbl compensatory curve, diagnosed age 14
    Rt Thoracic approx 60 degrees
    Lft Lumbar approx 60 degrees
    Proposed 2 stage A/P fusion T4-L4 or L5 (TBC)
    Consultant - Stewart Tucker, RNOH
    Seeking Second opinion - James Wilson Macdonald, Manor Hospital, Oxford
    Love my friends, family, the island of Mallorca, and eating great food!
    My Pre-Surgery X-Rays
    (Front Xray) http://i48.tinypic.com/mvlusw.jpg
    (Side Xray) http://i48.tinypic.com/s2f6na.jpg

  10. #10
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Vic,

    your xrays look a lot like mine did--I had matching 66 degree curves, and had my surgery at 46 yrs old. It was actually my 4 year anniversary yesterday. I was fused T3 to L3; knowing that some day I may need additional work. So far so good! For you--your curves are large 15 years earlier than mine were, but you're not in pain. I'd agree that you should probably take care of it sooner rather than later, but still that doesn't mean you have to do it tomorrow. Take your time and feel comfortable with the doctor that you choose. I know things are different in the UK, but still, I'd definitely not let anyone operate on me who I haven't met. You need to know what your 'gut' tells you about your surgeon!

    Good luck with your decision. It was the hardest decision of my life, but I'm happy with my outcome.

    Use this forum; it is a great group of people and a fantastic resource on anything you might ask related to your condition and surgery. I couldn't have gotten through without them.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  11. #11
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
    Posts
    15
    Hi Debbe! Congratulations on your 4 year anniversary and great to hear that so far you don't need to consider additional surgery.

    Out of interest, what was the condition of your lower lumbar discs (L3/4, L4/5 and L5/S1)? My issue is the degenerate L3/4 disc (plus listhesis) and some degenerate changes in L4/5. L5/S1 is healthy. Mr Tucker has recommended down to L5 for this reason. Obviously, I am keen to preserve as many levels as possible and still feel that it may be possible, as I was told by one of the individuals I saw on Mr Tucker's team, that despite the degeneration and listhesis present, if he were doing the op, he would initially fuse to L3 and 'cross that bridge' of an extension if necessary in the future.
    Last edited by PollensaGirl; 10-16-2012 at 06:13 AM.
    Vic
    30 yr old, Adolescent Idiopathic Scoliosis, Dbl compensatory curve, diagnosed age 14
    Rt Thoracic approx 60 degrees
    Lft Lumbar approx 60 degrees
    Proposed 2 stage A/P fusion T4-L4 or L5 (TBC)
    Consultant - Stewart Tucker, RNOH
    Seeking Second opinion - James Wilson Macdonald, Manor Hospital, Oxford
    Love my friends, family, the island of Mallorca, and eating great food!
    My Pre-Surgery X-Rays
    (Front Xray) http://i48.tinypic.com/mvlusw.jpg
    (Side Xray) http://i48.tinypic.com/s2f6na.jpg

  12. #12
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Hi Vic,welcome to the forum. I have to say I agree with Janet,Linda an Jennifer.im 10 wks post op now an can say that I dont really feel restricted.i have a wonderful flat back an nearly straight spine.im so glad I had my surgery an cannot express how pleased I am with the results.the longer you wait the worse your curves might yet,plus more pain,feeling more self conscious an possibly not as good as a result due to a stiff spine. i had anterior an posterior surgery in one go but have two really thin neat scars that will fade with time and feel like I can do nearly everything anyone else can just kneel down instead of bending.
    My surgeon says il have no problem living a normal life I will be straighter,able to have children just do some things slightly differently.
    Good Luck with your appointment
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  13. #13
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
    Posts
    15
    Jenna - Thanks and congratulations! That's great news, I've not heard from many 'L5ers' as yet so your post is so encouraging!

    My surgeon is also proposing an anterior/posterior approach but in 2 stages, so a week between operations. Did your surgeon tell you why he opted to do it in one go and not 2 separate operations? I have a feeling some consultants opt for 2 stage as it's supposed to impose less trauma in one go on the body however, I have had heard with the 2 stage, the week in between is horrid as you are pretty much immobile, aside from them turning you every 4 hours, and you have a chest drain in for the entire week. It also means a longer recovery. Preparing for one op, general anaesthetic etc is bad enough, but the thought of two operations is pretty daunting...Eeeek! :/

    Anyway, so happy for you and will let you know how appointments go this week! x
    Last edited by PollensaGirl; 10-16-2012 at 08:32 AM.
    Vic
    30 yr old, Adolescent Idiopathic Scoliosis, Dbl compensatory curve, diagnosed age 14
    Rt Thoracic approx 60 degrees
    Lft Lumbar approx 60 degrees
    Proposed 2 stage A/P fusion T4-L4 or L5 (TBC)
    Consultant - Stewart Tucker, RNOH
    Seeking Second opinion - James Wilson Macdonald, Manor Hospital, Oxford
    Love my friends, family, the island of Mallorca, and eating great food!
    My Pre-Surgery X-Rays
    (Front Xray) http://i48.tinypic.com/mvlusw.jpg
    (Side Xray) http://i48.tinypic.com/s2f6na.jpg

  14. #14
    Join Date
    May 2008
    Location
    Central NJ
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    1,956
    Quote Originally Posted by PollensaGirl View Post
    Hi Debbe! Congratulations on your 4 year anniversary and great to hear that so far you don't need to consider additional surgery.

    Out of interest, what was the condition of your lower lumbar discs (L3/4, L4/5 and L5/S1)? My issue is the degenerate L3/4 disc (plus listhesis) and some degenerate changes in L4/5. L5/S1 is healthy. Mr Tucker has recommended down to L5 for this reason. Obviously, I am keen to preserve as many levels as possible and still feel that it may be possible, as I was told by one of the individuals I saw on Mr Tucker's team, that despite the degeneration and listhesis present, if he were doing the op, he would initially fuse to L3 and 'cross that bridge' of an extension if necessary in the future.
    Hi Vic,
    sorry it's taken me so long to respond. My disks below the fusion were healthy, and as of my last check, they still were. I'm hoping they'll last me a good long time.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  15. #15
    Join Date
    Oct 2012
    Location
    Milton Keynes, Bucks, UK
    Posts
    15

    I'm going for it! :)

    Hi guys,

    I haven’t posted for a while but just wanted to let you know that I have finally decided to bite the bullet and have the surgery! It was a long process but I finally have the peace of mind I was looking for and feel positive about going ahead with the operation! ☺ Of course I’m also pooing my pants a little too!

    The last time I posted, you may remember I was quite disheartened as I’d had to defer my surgery, planned for the 16th October, at the last minute due to receiving a call from Mr Tucker the week prior, telling me that he recommended that I should be fused to L5, having been told L4 by his team for the last 6 months! This planted the seed of doubt once again as to whether I should go ahead with surgery now and forfeit my flexible spine, or wait until I absolutely needed the surgery. On top of the fact that I was lacking confidence about the surgery anyway as I had not met Mr Tucker yet.

    I explained to Mr Tucker that I wanted a consultation with him to discuss the procedure face to face before I made my decision as to whether I would go ahead. He was extremely apologetic about not having met with me already, confirmed that I could defer and arranged for a consultation on Friday the following week. I also made a private appointment with Mr James Wilson-MacDonald, as I felt I should use this extra time to gather as much information as I could, in order to gain the confidence I needed and make a well informed decision…after all this is not minor surgery!

    So...I met with Mr Wilson-Macdonald at the Manor hospital in Oxford last Wednesday, 2 days before I was due to meet with Mr Tucker, who instantly put me at ease. He was a very nice man. I took my images on a disc (requested these from RNOH and cost me 20 pounds but means you have your images on record) and he basically confirmed Mr. Tucker's prognosis, and recommended a fusion to L5. He also reaffirmed Mr. Tucker's reputation by telling me I was in great hands, and that he was one of the best!

    After examining me, he filled me with confidence about my post op mobility saying that aside from my back, I am pretty flexible in other areas (apparently I’m quite double jointed which I did not realize!) and this would compensate well for the flexibility I was going to lose in my back. He said that plenty of people fused to L5 return to skiing, horse riding and all sorts. He also confirmed, as I had thought, that now was the right time for me as I currently have no work/family commitments, I'm (relatively!) young and healthy (I gave up smoking 7 months ago in preparation!) and as I thought, he confirmed that the longer you wait the more risk of complications and the less chance of a good correction.

    I left feeling extremely positive…aside from the £275 set back (!) and although he had reaffirmed that it would be a longer fusion, I was encouraged by his positivity and was ready to meet Mr. Tucker in a couple of days!

    I met Mr Tucker last Friday 19th and it was even better news than I could have imagined! He had taken my case to discuss with his colleagues, including Mr. Jan Lehovsky who is one of the most senior consultants in this field at RNOH, and they had decided that on reflection and looking at my MRI’s in more detail they felt a fusion to L4 would be sufficient and the L4/5 disc had a very good chance of being absolutely fine under the fusion despite the slight degenerative changes present. He also told me that he planned to do one operation and only Posterior as opposed to the 2 stage A/P that his team had proposed before, as he felt he could get just as good a correction (my bending Xrays showed my curves to be flexible).

    I breathed a huge sigh of relief; only one scar, quicker recovery time and more flexibility…My mind was finally made up! I am booked in for surgery this Saturday the 3rd November! Aghhhh…Scary, but I’m so happy I deferred the surgery until I had properly researched my options and could actually meet with Mr Tucker in person. I think that your mind set is a powerful thing and it was important for me to be well informed and in a positive frame of mind before making this decision and going ahead with surgery. I would encourage anyone else in a similar predicament, to do the same before making this leap!

    I’d also like to say a BIG thank you to all of you for your support and advice… this forum has truly been a god-send and hearing how positive and brave you all have been about your experiences, pre, during and post surgery, has really helped me in making my decision and getting to this point…so THANK YOU ALL SO MUCH!!

    xxx
    Vic
    30 yr old, Adolescent Idiopathic Scoliosis, Dbl compensatory curve, diagnosed age 14
    Rt Thoracic approx 60 degrees
    Lft Lumbar approx 60 degrees
    Proposed 2 stage A/P fusion T4-L4 or L5 (TBC)
    Consultant - Stewart Tucker, RNOH
    Seeking Second opinion - James Wilson Macdonald, Manor Hospital, Oxford
    Love my friends, family, the island of Mallorca, and eating great food!
    My Pre-Surgery X-Rays
    (Front Xray) http://i48.tinypic.com/mvlusw.jpg
    (Side Xray) http://i48.tinypic.com/s2f6na.jpg

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