Scoliosis surgery - any BTDT advice?

[marbel]

My 17-year-old and I just got back from the orthopaedist for a scoliosis checkup.  Her curve has been hovering around 40-45 degrees (the threshold for surgery) for the past 5 years.  Her surgeon says he would be comfortable waiting as she has stopped growing and there is only about 40% chance the curve will get worse.  However, the year between junior and senior years in high school seems like the best possible time to get it done. 

 

So, we're pondering.  Just wondering if there is anyone here who has gone through this and has any words of wisdom. Or, if there is anyone living with scoliosis who opted not to get surgery or had surgery into adulthood - i'd love to know how that went/is going.

 

We have great confidence in the doctor.  We are not going to pursue alternative therapies.  She does do pilates and some yoga for core strength.

 

Right now her curve does not bother her as a body image issue.  It is only obvious when she is wearing a swimsuit or very tight top - her waist/hip curve is much more pronounced on one side.   But she knows her feelings about it might change.

 

Anyone have any experiences to share?  PM is fine if you prefer privacy. 

 

Thanks!

Edited March 4, 2016 by marbel

[EmilyGF]

A friend of mine had scoliosis surgery during his junior year of high school. During the winter he was out of school for 6 weeks (and I visited him every Saturday, becoming a favored friend!), but by April he was fit to go on a 17-day choir tour of Europe that involved lots of walking and standing.

 

Emily

[Monica_in_Switzerland]

My step-mom had the fusion plus rod thing done once around age 35 (IIRC), and for some reason had to do it again around age 55.  I don't remember why the second surgery was necessary.  The second one was less than 10 years ago.  I'm sure she'd be happy to answer questions if you want to PM me your email I can put you two in contact.  

 

 

[marbel]

Dot, thanks for your response. 

 

It is pretty amazing how it has all changed.  He did say that she could not go back to work (she works part-time in a cafe) for 2-3 months.  So she would be up and around quickly, but not back to normal quite so quickly.

 

As to why this summer... I don't think you were impolite at all!  It's a good question and I probably shouldn't have said summer so specifically. 

 

She is expecting to go to college; we don't know where yet, and it may well be local. But I'd hate to have her summer-before-college be filled with surgery and recovery and not running around finding dorm room stuff and all that, kwim?   She is currently homeschooling and taking two DE classes.  We are thinking of late summer, after her annual summer camp and a youth group trip.  That would most likely mean taking the semester off from DE (or take an online class, which she is strongly opposed to).  That would be fine.  So, for that matter, it could be in the fall or winter 2017.  But we are thinking that once college starts, it's going to get harder to get the time so it seems best to do it before then.  The doctor said early 20's are still fine as far as recovery, but that's also when careers launch. 

 

Does that make more sense?

Edited March 4, 2016 by marbel

[NoPlaceLikeHome]

A family member's child went to CHOP and they prescribed a brace which must be used for a lot of the day for a prolonged period of time. Is this an option because IMHO if a brace can work than it might be a better choice despite the inconvenience? I am sorry if I am being redundant.

[marbel]

My step-mom had the fusion plus rod thing done once around age 35 (IIRC), and for some reason had to do it again around age 55.  I don't remember why the second surgery was necessary.  The second one was less than 10 years ago.  I'm sure she'd be happy to answer questions if you want to PM me your email I can put you two in contact.  

 

Aw, that is nice.  If you think she would not mind answering a few questions, sure!  It would be helpful to hear from someone who did it in adulthood (though of course their cases most likely are quite different).  I will PM you.

 

A friend of mine had scoliosis surgery during his junior year of high school. During the winter he was out of school for 6 weeks (and I visited him every Saturday, becoming a favored friend!), but by April he was fit to go on a 17-day choir tour of Europe that involved lots of walking and standing.

 

Emily

 

That is encouraging!  That is one of the reasons for doing it sooner rather than later:  quicker recovery time.

 

A family member's child went to CHOP and they prescribed a brace which must be used for a lot of the day for a prolonged period of time. Is this an option because IMHO if a brace can work than it might be a better choice despite the inconvenience? I am sorry if I am being redundant.

 

Yes, she wore a brace from age 12 till about 15.  A brace doesn't generally correct the curve, but it can stop it from increasing while the child is growing.  But they stop using the brace after the growth stops as it doesn't seem to help after that.     She started with a 30 degree curve but ended with it about 42.  But who knows; the curve might have been 50 or more without it!  But then if it had... we wouldn't be in a gray area, wondering if she should have surgery or not!   :-)  Honestly, it would almost have been better if we'd gone in today and her curve was seriously worse so surgery would be a more obvious course of action.  (Of course, first preference would be that the curve would not have increased at all and surgery was off the table!) 

 

Thank  you for the responses.  You know how sometimes talking things out helps.

Edited March 4, 2016 by marbel

[Joyofsixreboot]

My dd who is now 23 had the surgery at 15. It was quite an ordeal. She has two titanium rods. She had complications, blood filled her chest cavity and she needed a transfusion. All that is rare but did happen. Her recovery took time but she was pretty mobile and felt better after a month. She does still have a 15 degree curve even after the surgery but hers was severe and getting worse. She has some nerve issues from the surgery. I don't envy you the decision.

[marbel]

My dd who is now 23 had the surgery at 15. It was quite an ordeal. She has two titanium rods. She had complications, blood filled her chest cavity and she needed a transfusion. All that is rare but did happen. Her recovery took time but she was pretty mobile and felt better after a month. She does still have a 15 degree curve even after the surgery but hers was severe and getting worse. She has some nerve issues from the surgery. I don't envy you the decision.

 

:grouphug: :grouphug:  to you and your daughter.   And thank you for sharing your experience.  This is what I fear, particularly the potential for nerve issues. 

 

 

 

[G5052]

My dd who is now 23 had the surgery at 15. It was quite an ordeal. She has two titanium rods. She had complications, blood filled her chest cavity and she needed a transfusion. All that is rare but did happen. Her recovery took time but she was pretty mobile and felt better after a month. She does still have a 15 degree curve even after the surgery but hers was severe and getting worse. She has some nerve issues from the surgery. I don't envy you the decision.

 

Similar story here although it was discitis (infection). It was a case "on the fence," and we chose fusion. Neither surgeon had EVER had a case of this before, and both were in their mid-50's. We had the complication that NEVER was supposed to happen.

 

I won't tell you the story of all that has followed in the 10+ years since, but the disability and pain couldn't be reversed and have only gotten worse over time. The result was a damaged spinal cord, nerve damage, and tethered nerves. Our medical expenses have been in the tens of thousands every year ever since.

 

The other problem with fusion is that it changes the mechanics of the rest of the spine. It isn't uncommon to have issues with the surrounding vertebrae years later.

 

I had a 35% curvature. In middle age I began to have problems, but weight training and swimming manage it for me. I periodically have PT and/or pay a personal trainer to help me work out the exercises I need to keep comfortable. It's an issue, but manageable for me.

 

I'm glad that some get great results from fusion, but indeed it's not 100% by any means.

Edited March 5, 2016 by G5052

[Pen]

Someone I know well had surgery and has had trouble with the lack of being able to bend back in later adulthood, and wishes the surgery had not been done.

[marbel]

Similar story here although it was discitis (infection). It was a case "on the fence," and we chose fusion. Neither surgeon had EVER had a case of this before, and both were in their mid-50's. We had the complication that NEVER was supposed to happen.

 

<snip>

 

I'm so sorry for all your daughter (and you) are going through.  Thanks for sharing your story.

 

:grouphug:

 

[marbel]

Someone I know well had surgery and has had trouble with the lack of being able to bend back in later adulthood, and wishes the surgery had not been done.

 

Thank you for sharing that.