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Thread: do scoliosis p-s have a life

  1. #1
    Join Date
    Apr 2005
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    2

    do scoliosis p-s have a life

    I would like to know if the people with scoliosis, that have done surgery (harrington rod) have a normal life, able to do their job and be fit. It seems that we are all messed up. Can i get married and actually being able to have children after anterior and posterior interfearance

    I am a 22yo guy with progressing right thoracolumbar scoliosis about 55 degrees, It seems that my body is not maturing because of scoliosis. My body is not getting stronger and remaining like i was when i was 14 yo. Will this surgery help me get in shape,
    valerik
    sacramento, ca

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
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    299
    Hi

    A lot of people on the surgical (revision) board have had Harrington Rod fusions, which are having many problems with now. I'm not 100 percent sure why the particular rods have become "screwed up" and thus caused much grief for many people.

    Harrington rods are still available, but Doctors rarely use them now, and use the other types of instrumentation that are now available.

    Which includes C-D instrumentation, U rods, Luque Instrumentation, and Dwyer instrumentation.

    These rods have much, much better outcomes, both in the short term and the long term, and there are less problems with "breaking", "dropping off", and areas of "non-fusion", and thus a lot less people "messed up"

    If you do go down the surgery route, do you know if they would definatly do Anterior and Posterior, or would they do one or the other??

    I'll use myself as an example for you. I'm nearly 19 years old, and will be six years post surgery in November of this year, I am fused with CD instrumentation, which goes from T2 to T11. I lead a completley normal life and spend much time dabbling in the extremes. The rods are not the determing factor in what I do, a lot of time I barely remember they are there, when I leave this life, I want to do with absolutely no regrets.

    I would have joined the Army, and would be fit enough to do so, if they didn't see having rods as a "liability". I abseil (rapel), canoe, run, swim, dance (ballet and hip-hop); and can heave boxes and lug stuff around with the best of them. If you haven't seen the scar, I haven't told you, you would have absolutely no idea I have rods in my back. A lot of stuff I can do physio wise is better than people who don't have metal in their back.

    Three years from now, I will have fully qualified as either a nurse or a prosthetist, and have full medical clearance to undertake the course. Marriage and children are on the agenda (and there's no reason I can't have kids), as well as a trip backpacking around the world for 6 months.

    Please don't get disheartened and try not too look to much at the revision board (I know it's hard not too). Have a look on the Adolescent board where you'll find many stories of absolute success and triumph after spinal fusion, fusions which were a complete and utter success.

    I wish you the very best

    Alison

  3. #3
    Join Date
    Mar 2005
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    2
    I have Cotrell-Debousset (CD) rods in my back from T5 to L2. I am 32 years old and had surgery in 1988. Up until I was 30, I was very active and worked at a tree nursery during the summers hauling around lots of big shrubs and trees, and thought I was in great shape with all the walking I did. A year after I quit, I started having sciatica. I started doing stretches I found on a website that addressed sciatica problems. Last November my sciatica got worse to the point the stretches weren't helpful. I saw a chiropractor religiously for 8 weeks to get rid of the sciatica, and even though it (sciatica) was greatly relieved, I had severe pain in my lower back where I couldn't sit down or go to sleep. Needless to say, I am going to try pilates and maybe yoga, and I am currently seeing another chiropractor to see if his techniques and therapy help me improve. I believe I can get stronger and get rid of this problem, I just have to be consistent in my stretching, exercise and whatever else will work.
    On the childbearing scene, I have been trying to have kids for 3 years without success. I was told by my doctor (Dr. Jesse Dickson of Scoliosis Associates in Houston, TX) that having children shouldn't be a problem. I think he is right. After having all these tests done, taking Clomid and having been told I have "unexplainable infertility" I believe my lower back may be preventing pregnancy because it is so messed up, and I never did any stretches or therapy to prevent it until now. So, after 8 weeks of chiropractic, this will be the big test.
    I think all of us have to continue being positive in that there IS someone out there that can help us feel better or exercises that we can do to make ourselves feel better, and it will be a combination of things that works. The problem is, that what works for one does not work for all, so each of us has to find our own "cure". Unfortunately it also involves spending alot of time and money to find those results. I feel fortunate to have had surgery because I think not having surgery would have caused other and perhaps more severe problems. I did brace for 3 years and my curve came back to 36 degrees less than a month after I took it off. I feel too young to feel this bad, as I'm sure alot of us do, but I really feel the persistence will pay off, even if it takes 10 more years to find what works for me. Good luck and have faith.

  4. #4
    Join Date
    Apr 2005
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    Thanks alison and amy very much for your stories. Well, to what i have knowledge, the surgery that i would have to go through would be one of those $250k comprehensive anterior or posterior/anterior(both)
    THe surgeon would probably get deep into me, starting fusion from my lower back, and its really longer recovery. It doesnt bother me, i will probably go ahead, because i height the feeling that every time i sit, my curve is getting worse, and then i am trying to straighten it up, //// Sometimes i am successful, and i look higher than when i dont stretch out. But it doesn't stay for long, and i have no motivation to stretch if it all goes away.

    I hope that, ok, even though my thoracolumbar back is messed up, maybe it will be stable after a surgery, And i hope that it will pay off by not stopping to press against my organs on the right (liver, and stuff). While the male and female organisms are different, i think that lower part, where the lumbar spine is, is associated with interior reproductive organs, and its really, even if i wouldn't do surgery, it would continue squizing juices out of me on lumbar right side

    I dont have any pain now, i had when i worked as mail handler for 1 month, it hurt reallly really bad in the lower spine. I learned that i must not pick up heavy items on all-time basis, Here and there, is fine, but when, Amy worked at tree nursery for while, i dont think she could avoid pressure down her spine.

  5. #5
    Join Date
    Mar 2005
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    Valerik I think you have hit the nail on the head by saying when you feel good you don't have the motivation to stretch (or exercise, or prevent yourself from doing the things you shouldn't be doing, like with me lifting heavy plants).
    It seems your curve is wreaking havoc on your body. Once you know you need surgery in order to prevent the curve from getting worse, it is so important to consistently exercise, stretch or do whatever it takes to keep the pain from happening in the first place. On good days when I don't have pain, I have to force myself to stretch and exercise and try new things that will help me over the long run.
    Back surgery is major trauma to our bodies and we have to be dedicated, whether we feel good or bad, to the activities that promote our health over the long run. I love gardening, and three weeks ago, after laboriously attempting to dig an 8' tree out of a place it wouldn't survive, I thought, 'You Moron! Digging a tree out of the ground is NOT good for your back!'. I'm learning my lessons.

  6. #6
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
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    299
    I do know (its in the back of my mind), that I'll probably eventually face disk problems below and above my fusion. I already have problems in my right shoulder (thoracic outlet syndrome which is hard to fix with the thoracic bit fused lol) and some dodgy numb bits in my left leg (not sciatia), which are legacices from having a questionable last back-brace (the way it was designed was a bit iffy, it was a "last ditch effort" and a "holding" (little correction) fusion, which means I am still very crooked (lol at the degrees the curves are, I'd still qualify for scoliosis surgery), but a solid and stable crooked lol.

    But.....I choose to "black box" the bits of dodgy that I have. The fusion was something that was likely to always have to be done, and I have absolutely no regrets with it being done. Yep I'm crooked, but I'm a stable crooked, and the curves can't progress :-) thus even though my lungs are a bit squished, they won't become so squished I need Oxygen and my organs are happy and unsquished, who lives life for today, does not think about the "what ifs", if they happen, they happen; but I don't want to have any regrets when I'm in my 80's, If.....only I'd done......

    Alison

  7. #7
    Join Date
    Apr 2005
    Posts
    29

    You can have a FANTASTIC life if you want to go for it.

    Hi:

    I don't even know where to begin to answer your posts because I have been dealing with very severe scoliosis my entire life, yet I never let us not my dreams of becoming a professional entertainer/singer. At 17 years old my scoliosis is 133. Now today after my last surgery was 2001 I am continuing to look for a scoliosis reconstructive surgeon that may be able to help my own life battles with scoliosis. But I think if you look at my web site www.FrankieBush.net ... Hopefully it might give you some small idea of what can be accomplished even though you have this extremely difficult road to go down. www.FrankieBush.net

    Also, you do know of a great doctor... Please let me know, thank you so very much, www.FrankieBush.net

  8. #8
    Join Date
    Mar 2005
    Location
    Johns Island SC
    Posts
    5

    Yes You Can!

    Just a word of encouragement, yes, you can have a normal life. I had 2 harrington rods put in for a 50 & 60 degree curve in 1973 and began an excercise program which included aerobics and swimming. For the most part I didn't even know the rods were there. I also did cross country skiing and went on extended snowmobile trips which require vigorous use of the upper exterimity. I'm sure you will do well. It is so important to have a good doc who specializes in scolosis.

    Unfortunately, in 95 I had to get my rods removed and am having disc buldging at the top and bottom of my fusion, but excercise is still important to me.

    Best wishes,

    Peggy

  9. #9
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73
    Hi Everyone,
    I am 33 and have had scoliosis since age 9. I was diagnosed and played softball still. I had surgery after the bracing was not working. I worked and had two 9 1/2 lb girls. Both which have my eyes hair and scoliosis. What a gene to pass to your kids huh. They are monitored and they both have no limitations.

    I want to make this perfectly clear though. I would not be facing surgery at 33 if I had not:
    1. Dropped out of school and held hard labor jobs.(meat dept.)
    2. While working I didn't go in for regular check ups.
    3. Never once did I take in consideration my rough and tumble would cause problems later. atc riding, pushing cars for little old ladies,wrestling,
    4. When my pain started I ignored it.
    5. Last but not least gained weight and stopped working out.

    I will go to the chosen surgeon this week and work out my game plan for surgery. I wish I could go back and do it over again. This time I would stay in school or make a plan for college, vo-tech or such. I truly say live your life but don't go for the gusto just because in your mind you don't want something saying you can't. I thought do it now before you get old. Well I feel old at 33 for what. Acting like a lunatic? Dance sure lift no. Woman with great healthy spines can't even do that.

    Stop and think. Life isn't "normal" so just do what you can and don't over do anything. Remember it isn't bad to say no and except limitations. If you don't do it know a judge for disability will do it for you later.
    Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  10. #10
    Join Date
    Jan 2005
    Location
    Woodbridge, Va (near Washington, D.C.) USA
    Posts
    6

    Absolutely!

    You can absolutely live a "normal" life with scoliosis and following surgery. I wore a Milwaukee brace for 3 years, had surgeries in 1988 and 1990, and am now 33 years old, married, with 2 children (4 and 2 years old). It has not been a "cake walk" but, for the most part, I have almost forgotten that anything was wrong with my back over the past 15 years.

    To be honest, I have recently begun having pain around the top of my rod, but I truly feel like the past 15 years have been a blessing. I am living the life I have always dreamed of.

    Don't give up! Life is for the living!
    Mylinda

  11. #11
    Join Date
    Jun 2005
    Location
    Waterloo, ON
    Posts
    8
    I'm a recent member and thought I'd respond to your question. I had C-D rods and fusion in 1986 most of the length of my spine. It has allowed me to lead a full life since then, just about pain-free. I wore a Milwaukee brace in my teenage years which slowed down the curve somewhat. But after having 2 children in my 20's the curve was much worse. The only way to get rid of the pain and be able to look after my children was to have the surgery.

    Without the surgery to correct the 54 degree upper and 48 degree lower curve, I'd hate to think what the last nearly 20 years would have been like. Now that I'm 50 years old however, I'm experiencing lower back pain and pain into my left leg, which makes it hard to walk or stand. This is due to deteriorating discs. I do not regret for a minute having had the surgery I had, and am trying to find what the next step will be to correct this new problem.

    I guess my thoughts are, take one day at a time. And whatever I have to do to lead as much a normal life as possible, I will do. Even though I envy people who do not have scoliosis, or pain, or having to make these hard decisions.

    Hope you make the right decision !

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