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Dealing with pain for 11 yrs now...

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  • Dealing with pain for 11 yrs now...

    Hi everyone I was browsing the internet and found this site. I am so sorry for all of you who have had to deal with this, I've been dealing with mine for 11 yrs now...I was diagnosed in 1993 and was told I had crippling scoliosis w/an "S" curve, my curvature was almost 90 degrees and they had to operate fast or I would end up in a wheelchair. I was the first to have 3/4 of my spine fused with a steel rod and 4 compression screws in Florida (as told by my doctor) I was so hunch backed that my left rib was over lapping my hip bone, needless to say they had to take it out...unfortunately when they did they punctured my diaphragm (sp?) and collapsed my lung, which is still and will always be partially collapsed. Anyway, other than the chronic pain I'm doing good. I work full time and have a loving husband of 4 years. I've had 2 beautiful babies, 3 yrs and 13 months; no epidurals and it hurt but I have my blessings and that's all that matters.
    With the extent of my curvature and some complications my doctor restricted me big time, I was exempt from PE in high school, couldn't drive 'til I was 18. Some doctors say that my condition is still pretty bad (you can't tell by looking at me though) One says my bones are slowly deteriorating. I was just wondering about dealing with the pain, if there really is a way???
    Good luck to you all and feel free to chat back. It's nice to know we aren't alone...
    Last edited by kmhane; 04-22-2005, 04:05 AM.

  • #2
    Hi, I was diagnosed with scoliosis at 12, wore a brace, got operated at 26, then again at 28 to take out some hooks that prevented me from moving my right arm and now at 34 have a broken rod so I'm waiting for my results of my bone scans and am pretty discouraged right now Just when it seems to get better(the pain), something always pops up. I deal with the pain by taking rest periods, massage myself and I know that I wouldn't be able to work for sure. I sometimes go to acupuncture, I exercise everyday(walking, bycycling and light weight lifting), plus I have to strecth at least 4 times a day or I'd feel really stiff. As for pain medication, I ONLY take Imovane for sleep, it does numb some of it and without it I wouldn't sleep and be in even more pain, since sleep does help a lot. Not that I sleep well or long hours with it but at least I get 5 or 6 hours if I'm lucky. I take calcium and recently took a lot of Glucosamine. Ice for a period of ten minutes at a time helps too. Swimming helps but I've been lazy on that since of the cold temps these last years. I'm also married with a wonderful husband who understands pain since his health hasn't been always at it's best as well. I wouldn't think of having kids though, not with this pain and it's not that big of a loss for us since we didn't think about that too much but our health first. Right now I'm just trying to be brave to face another surgery most probably, and from reading experiences here it is hard but hey.

    As far as pain goes, I know how to deal with most of it with little infos and experiences that I got through the years, if I could be of any help to anybody
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

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    • #3
      Kmhame-
      Your story was very interesting to me because I had almost the exact situation. My scoliosis curve is still around 75 degrees and my kyphosis curve is around 30 degrees, after three back surgeries. When they put the rods in they collapsed my lung also and it has never recovered. A year after the rods were put in, however, they had to take them out due to infection (the doc says my body literally rejected the rods). Being as that I am 24 it was very nice to hear that, although you had similar problems, your life has gone on. I know that things will not be easy for me but it's nice to hear that life will still go on, as yours did. Thanks.
      Jennifer

      26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

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      • #4
        Hello Girls:
        I am so sorry to hear the trouble that you both have faced. I know I've had my own share, but we have to pray and move on.
        I have led a basically normal life with the exceptions of my limitations and pain...but I hate to discourage you, by having my beautiful children I have become worst;as expected because childbirth is hard enough on our bodies with out having problems already. I have had more pain with spasms etc. and I recently started working 5 months ago so that doesn't help very much...I am 25 yrs old and I am finished with childbirth, 2 kids are more than enough. Now I'm trying to live a normal life. If you both want kids...always remember God won't give you anything you can't handle. I had major complications with my 1st child and my 2nd got stuck for an hour,I begged for a c-section but my Doctor didn't want to put me to sleep, since I can't have any epidurals, they were natural, completely natural, they were over 8 lbs, and I'm only 5'2" with a small frame.
        My biggest thing is I've gone to 2 doctors and they both say it's worse than better. I don't know what the future holds but i know with my faith I can get through it and so can you both.
        Like I said before atleast we are not alone.
        Feel free to chat anytime and if you have any questions that I can help you with just ask. I hope this has helped you both some. Thank you for replying.
        Kristie

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