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Thread: New and confused

  1. #1
    Kayde Guest

    New and confused

    I am new to the forum. I am now in a position where I am contemplating surgery for the first time to correct a 72 degree curve. I am told that once the surgery is completed the rib hump will correct itself and it will be all wonderful and I will feel better than I have in years. I am worried that it might not be the case. I know that I have restricted breathing issues at this point and right leg and hip pain but I still have a good range of motion. I am wondering if it really is worth doing the surgery and what the real consequence will be. I know each person heals differently and I travel with my job and can't afford to not work. Any advice for an adult patient? I bought myself 30 years between diagnosis and possible surgery trying to allow the technology to improve but I just need to know if you had to do it all over again would you do it ? I don't want to end up worse in the long run.

  2. #2
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    Quote Originally Posted by Kayde View Post
    I am new to the forum. I am now in a position where I am contemplating surgery for the first time to correct a 72 degree curve. I am told that once the surgery is completed the rib hump will correct itself and it will be all wonderful and I will feel better than I have in years. I am worried that it might not be the case.
    Well, the rib hump is caused by the rotation. It will disappear to the extent the surgeon is able to de-rotate your curve. If you are extremely rotated like my one daughter, they may be able to remove some or even most of the rib hump. The other thing is the fusion has to extend through the thorax. If you have a rib hump due to a compensatory curve in your thorax from a structural curve in your lumbar then it will probably improve once the lumbar is straightened. I don't think any surgeon would fuse a compensatory thoracic curve just to remove a rib hump but of course I don't know that. I'm just saying I would question the surgeon if they wanted to fuse a compensatory curve on either of my daughters for any reason. I would need no less than 5 top surgeons independently giving me the same good reason to fuse a compensatory curve.

    Good luck.
    Last edited by Pooka1; 07-30-2011 at 08:59 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    I've had many doctors in the past (as a military brat moving around every 3 years), and they all have told me that it's getting serious above 45 degrees, and surgery is considered. Especially when it affects your breathing. Before and after my surgery, I had breathing tests done, and mine has improved since then. But you could always play the clarinet or the trombone to improve that. : ) I couldn't run a mile before my surgery because of breathing, but I do it a lot now with no problems.

    I can't say much about traveling. I'm only 19, so I don't really feel the affects as much as I probably will as time goes on. Driving 12 hours to college is fine. Flying is uncomfortable at times, but not bad.

    Knowing what I know now and how I feel, if I had to go back and make the decision again, I would still have my spinal fusion. I know it's different for everyone and I'm really young still, but I'm so happy with my results. There is a point when scoliosis starts affecting other things than just the way you look.

    I can't speak for everyone, but I think almost everyone with a spinal fusion would agree that everything is not completely wonderful and ideal now, even though it may be so much better. Knowing the possibilities of the benefits and downsides, plus the amount of pain you're experiencing now, is important.

    Hope you're very happy with your decision in the long run.
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  4. #4
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    Quote Originally Posted by braceyourself View Post
    I can't speak for everyone, but I think almost everyone with a spinal fusion would agree that everything is not completely wonderful and ideal now, even though it may be so much better. Knowing the possibilities of the benefits and downsides, plus the amount of pain you're experiencing now, is important.
    Good point.

    I look at fusion as cutting losses. In most kids, this seems clearer or more obvious than in some adults for various reasons. It's a small mercy that my husband and I really had no choice but to pull the trigger on surgery for both our daughters. There is cover in that. It's all upside for my daughters compared to not having surgery and is expected to stay that way for their lifetime. Their teenage years, not to mention their lives, were saved. Literally.
    Last edited by Pooka1; 07-31-2011 at 10:33 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    I am in a much better place than I was 3 years ago. I'd say the year prior to my surgery I started having the most pain--lumbar and nerve pain down my right leg. I also had hip pain from time to time. I don't have any of that any more, but sometimes now I have muscle spasms in my upper back--which I can deal with.

    I am happy that I am relatively pain-free and that most importantly, I won't be getting worse. My curves were both 66 degrees--see the numbers in my signature.

    I had to consider that I was young(ish) and otherwise healthy, and if I were going to do it, this was the time. I'm sure glad I did.

    How old are you? How many surgeons did you see? I also advise on seeing multiple top surgeons. Have you checked the list on http://www.srs.org/find/

    You only have one back and you don't want an inexperienced surgeon making a mess where you'll need someone else to clean it up later.
    __________________________________________
    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

  6. #6
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    Quote Originally Posted by debbei View Post
    I am in a much better place than I was 3 years ago. I'd say the year prior to my surgery I started having the most pain--lumbar and nerve pain down my right leg. I also had hip pain from time to time. I don't have any of that any more, but sometimes now I have muscle spasms in my upper back--which I can deal with.

    I am happy that I am relatively pain-free and that most importantly, I won't be getting worse. My curves were both 66 degrees--see the numbers in my signature.

    I had to consider that I was young(ish) and otherwise healthy, and if I were going to do it, this was the time. I'm sure glad I did.

    How old are you? How many surgeons did you see? I also advise on seeing multiple top surgeons. Have you checked the list on http://www.srs.org/find/

    You only have one back and you don't want an inexperienced surgeon making a mess where you'll need someone else to clean it up later.
    Your last sentence says it all. I had an experienced surgeon in NC and he messed my back up really bad. Luckily , I found my new surgeon here in CA and he was able to fix it

    Melissa
    Last edited by mabeckoff; 08-09-2011 at 08:22 PM.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
    Kayde Guest
    I have had two orthopedic surgeons tell me that it is time. One of them I found on the website It is difficult to imagine how you will move and how much flexibility you will lose. I don't want to lose the ability to dance and golf and do the little things I do now. But breathing is a problem and my rib hump is almost on my right hip. I go back in a few weeks to see if he will do the surgery since I had a bad bone density last year. I just hope that if he decides my bones can handle the surgery that I can be back to work in the 7 weeks I have available. That's my largest short term fear is that I won't be able to return to work within the time allotted and I can't go without a paycheck

  8. #8
    Join Date
    Jul 2011
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    535
    Hi Kayde,

    I, too, am at T72* and also have L59*. I have absolutely no hesitation to schedule my surgery because the quality of my health and lifestyle have been eroding at a fast pace. 5 years ago I was ~40* so I'm focused on stopping the progression. Your breathing issue will not improve without surgery. I kept a grin-and-bear-it attitude for almost 10 years and it certainly did not improve my situation. My rib hump is to the point where my lower right ribs are pressing into my pelvis. I meet with Dr. Lenke next month and look forward to scheduling a surgery date with him at that time.

    Write down the pros and cons of doing surgery sooner v. later. Can you really afford to postpone surgery if you are already at 72*?

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  9. #9
    Join Date
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    Location
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    Quote Originally Posted by Kayde View Post
    I have had two orthopedic surgeons tell me that it is time. One of them I found on the website It is difficult to imagine how you will move and how much flexibility you will lose. I don't want to lose the ability to dance and golf and do the little things I do now. But breathing is a problem and my rib hump is almost on my right hip. I go back in a few weeks to see if he will do the surgery since I had a bad bone density last year. I just hope that if he decides my bones can handle the surgery that I can be back to work in the 7 weeks I have available. That's my largest short term fear is that I won't be able to return to work within the time allotted and I can't go without a paycheck
    7 weeks...I don't know that I could have done it. Heck I was still on pain meds and taking 2 naps per day at that time, but then of course, everyone is different.

    I too was hung up on the flexibility issue. It terrified me. I even posted a question asking how sex was possible with a long fusion LOL, and well, yes it is Most days I don't even remember I'm fused. It's the new normal for me. Once in a while I'll get some spasms and tell someone I fell like I've got a stick up my butt, LOL, but not often. As far as dancing, a little over a year post-op, I started taking zumba dance excercise classes. I go at least 5x per week, and people tell me that they would never know I was fused. I feel it myself--I can't do all the wiggly moves that the instructor does, but heck, most people don't do that anyway!

    I know we also have a golfer on our forum who is back to golf. Fusion doesn't have to stop you from doing the things you love. Heck, as per a recent post, you can even go on a rollercoaster. We also have a die-hard skier on the forum (Ed) who is back to his old crazy activities.

    We know it's scary, we've all been there. I even asked my husband to have a big summer party with 100+ people a month before my surgery, and honestly, the reason was I was afraid that I'd never see them again.

    Let me know if you'd like to talk by phone. Many people spoke with me prior to surgery and it really helped. I even met some in person. You need support from people who have been there, done that.

    ((Hugs))
    __________________________________________
    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

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