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Thread: ?'s re:lumbar scoliosis

  1. #16
    Join Date
    Nov 2004
    Location
    U.K.
    Posts
    137
    They stopped my fusion at L5 too - my surgeon prefers not to fuse to the sacrum but says that it will still be possible to do it at a later date if needed.

    My curves have been reduced by about half (so i still have two 30+ curves). I gained 2 inches in height. My surgeon always tries to get the best correction from the fewest number of fused levels - I did have some complications though so maybe could have been straightened a bit more.

    They say full recovery takes 6-12 months and that is about right, although I was able to get out and drive and do loads of 'normal' stuff after about 4 months . Lots of people do better than me, as I have spina bifida so have some other problems.

    I would have it done again in a heartbeat, although I would have opted to get it done younger had I had the chance!
    Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
    Post op 30(T)/33(L)
    http://warpedwoman.blogspot.com/

  2. #17
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Ivan,
    I was hoping for some miracle too for my daughter where she wouldn't require fusion and have tried several types of therapies and braces which none of them worked for her. We asked the fellow (a dr. training to be a specialist) at the dr's office yesterday if there was anything new coming along that was worth waiting for and he honestly told us no, there's not a ton of research going on and there's nothing new in the pipeline. I think there will be advancements and improvements in surgical techniques but as far as a fusionless surgery for advance scoliosis, that may be many years from now. I wasn't considering surgery at all a few months ago, but now see it as the best hope we have of preventing problems in the future. The odds are in her favor now because of her age that she will have an easier and more successful outcome but everyone has to look at their own circumstances to make that decision. I hope everything works out for you.

    Pips, I saw your before and after photos, you are really standing up nice and straight, I'm very happy for you. It's reassuring to me when I hear older patients say they wished they had done this when they were younger because this is the most difficult desicion I've ever had to make.

    Have a Happy Valentines Day everyone!

  3. #18
    Join Date
    Nov 2004
    Location
    U.K.
    Posts
    137
    Sherie

    There are lots of people who have surgery in their teens very successfully. You have to weigh up the surgery against any future progression. At your daughter's age they could do nothing for me becasue of my spina bifida and possible complications, but I wouldn't wish my last 10 years of progression on anyone and genuinely wish that I had had chance to do it when i was younger.

    I do hope that you come to a decision that you are happy with and whatever you decide, that it all goes well for you and your family.

    Best wishes.
    Pip
    Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
    Post op 30(T)/33(L)
    http://warpedwoman.blogspot.com/

  4. #19
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Thank you for the kind word Pips. We are looking at surgery this summer because of the steady progression of her lumbar curve, with the thoracic following right behind (the evil twins). By the way, I read some of your blog a while back so I feel like I kind of already know you, you have a nice engaging style.

  5. #20
    Join Date
    Nov 2006
    Posts
    27

    Ivan

    These forums do help so much, its good to know that one is not alone in this world, One of the things that i wonder i heard that when u have metal in ur body or something like that and it gets cold outside ur rods get cold too and makes ur back hurt for that reason, is that true?

  6. #21
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hey Ivan
    I've just seen several posts this week about that very thing. Apparently some people do feel the cold in their back, we live in Houston so it shouldn't be a big problem here. Anyway, you should post in the adult section, I think you'll get a lot more responses there. Take care.

  7. #22
    Join Date
    Feb 2007
    Posts
    10
    Hi there!!
    I have a single lumbar curve. I had surgery back in 1978 at age 14. My curve was 66 degrees and had increased by 10 degrees in 6 months at that time. My curve was originally straightened to 27 degrees. Unfortunately, the bone graph popped at the hook assembly. I was off to surgery 1 month after the first. I grew 2" during surgery. I've now lost an inch. I have a single Harrington rod which broke about 2 years after insertion. My dr suggested that we only do something if the curve started to move. It didn't for a long time and I never had follow up appointments with regard to my spine. I just recently learned that the reason it broke was because the fusions did not take. I do have fusion up higher on the curve, but the L4, L5, and S1 vertebrae did not. Now I have accelerated degenerative joint disease and osteoarthritis in those three joints. I'm looking at the possibility of another surgery to remove the lower portion of the broken rod and insert two rods and screws. The tough decision I face is when is it best to go ahead or if I go ahead with surgery. How much pain is too much to live with before I decide it's time to go ahead. Everyone is different. I know I can live with the pain as it is for a while, but do I want to?
    The amazing thing is that I was able to go 28 years before having to address this again and able to do many things that I probably wasn't supposed to; soccer for one. I don't do that anymore, but I'm not so sure it has anything to do with my back. I also had two children naturally and unfortunately gained more weight than I should have in the process.

    I never got the sensation that my bar got cold so I did. The only thing I ever noticed is when I got really cold and I shivered through my torso that I seemed to be able to "feel" it.

    Connie

  8. #23
    Join Date
    Nov 2006
    Posts
    27

    Ivan

    wow well dont know what to say Connie, I've been debating surgery, the pain is there its not to the point to were its killing me but it does hurt and i hate it.. I guess for me the major part of the reason i want to get surgery is b/c of my appearence, they say u cant see it or notice it,(with clothes on) but i do, and i hate it, hate going to the beach and not be able to take my shirt off stuff like that.. But u know If u are going threw some pain and u think u can handle the surgery why not get it now and not wait till one day that u may not be able to handle it so easily.


    Ivan

    so u felt the rod in ur back when u shivered that must have been a crazy feeling..

  9. #24
    Join Date
    Feb 2007
    Posts
    10
    Ivan,
    I can relate to what you are saying about appearance. My curve was better after surgery, but I can still tell that there is a tilt to my clothing. Clothes just don't fit us the same as someone without scoli. It's not easy to do, but don't let it bother you so much. I always wore my bikinis; even after surgery with a big scar down my back. If it bothers someone, then they don't have to look. I hope you don't miss out on things because of this. It's not worth it.

    So are you planning on surgery soon? Who do you see?

    You know, I think it's more that when I am cold my muscles are tense. I seem to feel it then. I realized that more tonight as I had to go out in the cold here in upstate NY. We had a big Valentine's Day storm this week and got about 40" of snow. What a day that was!!

    Thanks for responding Ivan. :-) Connie

  10. #25
    Join Date
    Nov 2006
    Posts
    27

    Ivan

    So is the scar pretty big? I thought that with time it blended in and it would end up like a hair line looking scar? so ur scoliosis is in ur lumbar section? Im not sure about the surgery i want to get it b/c i know that i may need it in the future and if i get it now while im young it'll be better than more far the line when i may not be strong enough to handle such a surgery.
    are u able to bend down pretty good or are there lots of limitations?


    Ivan

  11. #26
    Join Date
    Nov 2006
    Posts
    27
    [QUOTE=kardoid]hey Sherie, thanks for that info. im bearly going to go get a consultation on the surgery they havent told me anything yet but by looking at my xrays thats what i think i guess im just playing dr. here. But i also think that my curve ends at L5, hopefully i get that info and the fusion wont be complete. Also all the luck to your daughter hope all goes well and just like all the other scoliosis suferrers hopefully something comes up soon that will make us straight with out surgery.


    thanx once again[/right lumbar curve T12- L3 43* T12-L5 69*]

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