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Thread: Parent seeking input from adults who had scoli surgery

  1. #1
    Join Date
    Jun 2011
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    12

    Parent seeking input from adults who had scoli surgery

    Hello - my 16 year old special needs daughter has had scoliosis since she was 5. Three years watching, three years in the brace, and now three out of the brace. Curve continued to progress through all this and upper curve is now 66 and lower is 58. Ortho recommends surgery and a second opinion at Mayo in Rochester MN concurs. I have been agonizing over this decision whether to proceed with surgery on the "assumption/possiblity" that the curve will keep progressing the rest of her life. The justification for the surgery from the docs is as follows: data shows the curves typically progress in special needs kids and do not stabilize, the concern over the upper curve if it keeps progressing could impair heart and lung functioning, and lastly to prevent back pain and likely disc degeneration/spine issues as she ages. From what I have read on this site the surgery is huge and life/body changing. Difficult enough for a "typical" person who makes the decision for themselves. This is a huge load for me to make this decision for someone else who really will not have much ability to give input on her wishes. There are so many risks. Not to mention her body will be changed forever in its ability to bend. To the people that have had the surgery, do you really feel you are better off for having had it? Most importantly, do you still have pain? Right now she has a little pain but it will just be so distressing if she has more pain afterwards (not counting the pain that I know wil be there during the healing time). What about the ability to continue to do your daily living like bending and tieing your shoes, getting in and out of the shower, dressing yourself, personal care etc. She has finally gotten to the point at 16 with a lot of therapies where she is mostly independent. I just can't have her going backwards and becoming more dependent at this point in her life. Lastly, what about resuming fun activites like swimming, going down waterslides, tubing behind motor boats, horseback riding, riding bikes (all things she gets to do at her Autism Camp each year) long walks, riding the recumbent bike at the health club. Will she need help with all these things whereas now she can do them independently? Her surgery is recommended from T3 to L4. Lastly, if you do recommend surgery, what time of year do you recommend? One person that posted on this site said in the springtime as it is warmer and easier to get outside to walk. A big thank you to anyone who responds. It would be greatly appreciated

  2. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    welcome to the forum. My name is Kara. I'm 19 almost 19 1/2. i also have special needs. I had scoliosis surgery last year on march 10th. it a really complex surgery. but she will do just fine. good luck with her surgery
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  3. #3
    Join Date
    Jun 2011
    Location
    Indiana
    Posts
    68
    I'm personally very glad I had my surgery. I typically don't even think about my back as I do things throughout the day now. Once in a great while, there are times when I really wish that I could just bend my back again, but it hasn't stopped me from doing anything. Pain-wise, I'm very happy. I really have no pain that's surgery-related. But it is different with every person.

    My parents and I had to weigh these options too. If you wait, you risk a lot. But if you do it now, well, that's a lot to go through. But you do recover more quickly and easily at a young age.

    I had my surgery in November, which made it very difficult on me. I couldn't walk outside, and when I had to leave the house, I shivered so much that it was extremely painful. If I could do anything over again, I would do it during the spring.

    I needed my mom's help for a few months after surgery. Obviously, I understand that it would probably be more so in your case. It was hard for me to put socks and shoes on for a while, but in time you gain your independence back.

    Lastly, if the doctors are recommending it, I would seriously consider it. I personally believe that second opinions (and maybe 3rd or 4ths) are very important.

    Sorry this was pretty long, but I know this is a huge decision for anyone to make, and I'm sure you want to know as much as you can. I'll be praying that you make the best decision for your daughter and that all goes well.
    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
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    The very best of luck to your daughter. I can't imagine how difficult this must be for you, but as Kara says, and I suspect she's right, she will be just fine.

    Very few of us regret having the surgery. Having the surgery enhances our abilities to do things rather than take away because it generally takes away or reduces the daily pain. Yes, we need to learn how to do some things differently. Getting dressed for example, and for me, cleaning the bath tub, oven, shower recess. But at least I can do it and I do it pain-free. I am quite sure I could ride on a tube, use waterslides, horseride and other things. (Not that I've tried!)

    Your daughter's curves are getting to the stage, I would be seriously concerned about further progression. If they are continuing to curve, it may be a smaller, less risky surgery now than in 5 or 10 years. And it might save her a lot of pain during those years, to get it done now.

    It's tough that you need to make the decision on her behalf but I'm sure you know her best and will make the right decision. Good luck!
    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

  5. #5
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    marykay,

    Making the decision to allow a surgeon to do my daughter's surgery was the hardest thing I've ever had to do. Do I regret our decision? No. Does Jamie regret our decision? No and we never have regretted our decision. Jamie had her surgery when she was 13 y.o. and she will be 20 y.o. next month. She had to adjust the way she does some things after surgery, but they quickly become their new normal way of doing things.

    You asked how surgery affects their ability to swim, ride bikes, etc. Jamie joined the swim team AFTER her spinal fusion. She rides her bike on trails through the woods. She rides our 4-wheeler in the mountains over rocks and fallen trees. Her surgery hasn't stopped her from doing anything she wants to do.

    The timing of surgery is up to you. Since your daughter likes to go to camp where she will want to swim and go horseback riding, I'd sugget that you schedule the surgery immediately after she returns from camp, especially if she goes the same week every year. That way, hopefully most of her restrictions will be lifted before she goes to camp the following year as some restrictions last a full year.

    My biggest worry/concern for your family is the fact she might not understand that she can't bend and twist for a few months after surgery. To deal with this and the fact her back won't bend afterwards, could you and her therapists work with her before surgery to make the adjustments easier for her and you?

    Best of luck to you and your family.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi marykay...

    Since I work in a spinal disorders surgery clinic, and literally see hundreds of patients each week, I can say that the vast majority of patients eventually get to the place where they're glad that they've made the decision to have surgery. I had my original scoliosis surgery 20 years ago. Looking back over those 20 years, I can't say that I was satisfied with the results, but I don't know what the alternative would have produced. I certainly would have lost a lot of function. I had revision surgery this January, and am ecstatic with my results.

    It's so difficult having to make the decision for someone else. It sounds like your daughter really needs this surgery, however, so I think the writing is on the wall. I think all you can do is choose a really good surgeon, who does a lot of these surgeries.

    Your daughter should be able to do most of the things that she does now, although there will be some time during the early recovery, when some things are not allowed. The only thing that might be difficult in the long term is tying her shoes. It depends on how flexible she is in the hips.

    Best of luck on your journey. No matter what happens, I hope you won't beat yourself up. This is probably going to be much harder on you than on your daughter.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
    Join Date
    Sep 2003
    Location
    NJ
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    1,291

    Cool tying shoes

    I am 69--fused T-4 to sacrum. I can tie my shoes, shave my legs, squat, hike, clean ovens and shampoo carpets. Also cut my own toenails.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    MaryKay

    It looks like surgery is inevitable....

    At some point you will have to accept the fact that sometimes we really need to have our surgeries. Making this decision will be hard for you, but in the end, you know that you are doing the right thing. Saving her from the pain many of us elder scolis have endured through the years will be a blessing.

    This might be of interest...
    http://www.scoliosis.org/forum/showt...sive-scoliosis
    http://autism-and-scoliosis.blogspot.com/

    Wishing you all the best.
    Be strong
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #9
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Marykay,

    My son had his surgery 4 years ago and he can basically do anything/everything. He is on two swim teams throughout the year. He is in two marching bands, he hikes and goes on long walks, rides his bike (he's gone 20+ miles at a time). He's been to several water parks and spent days going down water slides. Recently he went tubing and really enjoyed it (he tried waterskiing which didn't go as well).

    I think it will just be slow-going at first, during your daughter's recovery. What we found though, is that walking really helps with healing and the pain of recovery. Also, the more he did, the more he could do...

    Good luck with it! I certainly know what a difficult decision this is, esp. if your daughter isn't having much/any pain right now and seems relatively fine with her scoliosis at this time. Kids do heal so much more quickly than adults though. My son was off all pain meds within 2.5 weeks of his surgery.

    Best,
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  10. #10
    Join Date
    May 2010
    Location
    NJ
    Posts
    70
    Hi Mary, I had surgery in 2002, and did well, I was fused down to L5, now over the years I started to curve at level L5 & sacrum (saggital imbalance) I am 68, I had revision surgery May 9 2011, & June 21, I feel so good. I can stand upright without support, walk without a cane, I am planning to go back to work soon (3 days a week as a hairdresser) I do think for most people surgery does work good, My surgery was at Johns Hopkins, so good luck to your daughter.

  11. #11
    Join Date
    Jun 2011
    Posts
    12
    Thank you to everyone for all your information. It looks like we will probably do the surgery next May. I just wish they had some newer technology that would allow for more flexibility. Sometimes I think if we waited to have the surgery, some newer technology may come along in the next 20-30 years. If we do the surgery now, there is not turning back. Again, thanks for the information. It really helps to know others have gone through this and that we are not alone. Kay

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by marykay View Post
    Thank you to everyone for all your information. It looks like we will probably do the surgery next May. I just wish they had some newer technology that would allow for more flexibility. Sometimes I think if we waited to have the surgery, some newer technology may come along in the next 20-30 years. If we do the surgery now, there is not turning back. Again, thanks for the information. It really helps to know others have gone through this and that we are not alone. Kay
    The fact that revisions can be successful implies that there is the possibility that we can go back some day. It is not unreasonable to suggest these guys will eventually figure out how to take down a fusion and then use a nonfusion technique to maintain the correction while regaining flexibility.
    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."

  13. #13
    Join Date
    Jun 2011
    Posts
    12
    It would be nice if that were true. But we were told the fusion involves taking bone chips from a bone bank, much like grape nuts in appearance, and sprinkle them along the spine in the area to be fused. Then over a period of six months that gels/sets and the bones are fused. I just can't picture taking that apart; what a mess that would look like and the risks of doing that.

  14. #14
    Join Date
    Mar 2010
    Posts
    2,004
    Marykay, did you consider the Spinecor? If Risser is not low, may be the end of growth not be so far. It not exist in my country, so I never saw one, but I was talking with a Dr. working in a Spinecor center and I beleive that it may keep the spine straight. All the straight that flexibility allows. In other words, it may keep the spine with the same degrees than being lying down. You may have a good idea about that measuring in the floor and then stand up. Of course the best would be taken an X-ray.
    If Spinecor allows your daugther to stay with around 40, I think would exist a chance to stop progression.

  15. #15
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Flerc,

    MaryKay lists her daughter's curves as 66 and 58. Clearly surgical territory. I am sure if SpineCor (or any bracing for that matter) was appropriate for her their orthopedic surgeon would have recommended it.

    MaryKay, I know how scary it is to send your child into surgery. My daughter had surgery last year, and although it was VBS, minor compared to fusion, it was terrifying nonetheless. Best of luck to you and your family.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

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