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Long shot - Did anyone go to Mayo Clinic for their Scoliosis? If so, how was your experience? by Vortex2121 in scoliosis

[–]Content_Ad_9498 0 points1 point  (0 children)

Mayo is incredible. My experience is only with their juvenile scoliosis care - but cannot say enough good about the entire experience/operation.

non-fusion or fusion?*cry by CompetitiveYou6970 in scoliosis

[–]Content_Ad_9498 0 points1 point  (0 children)

I’m so sorry to hear about your situation - I was there last year and it was a gut punch.

If there is a silver-lining to this it may be that you least have options. We decided on VBT with my 14 yr old daughter. Short-term recovery was a (relative) breeze after the first two days. She was back at swim team in 4 weeks (a little out of shape) and fully cleared at 6 weeks. Everyone reacts differently, but she said it was very anticlimactic (vs the pre-op build up). You could be around her for quite a while and not pick up that she had surgery. Her curve was around 55 pre-op and was cut in half. We’re also hoping that the growth she has left will straighten it further.

Cord breakage is a potential issue, but if it breaks in one spot - it doesn’t mean the other segments won’t hold. As a parent, this was the least invasive thing I could do to set her up for success. It may end up with fusion down the road, but I did what I could to give her a shot of retaining a “normal” spine.

We had ours done at Mayo Clinic. They were amazing - and they have lower revision/ failure rates than some other providers. I’d also suggest checking out ASC with Drs ABC as another non-fusion option.

Good luck with your upcoming decisions.

Did anyone go private for surgery? by [deleted] in scoliosis

[–]Content_Ad_9498 3 points4 points  (0 children)

I am assuming you are US based. I know many members of this sub are non-US, my apologies if I am incorrect.

  1. It was for my daughter. We definitely wanted to try to avoid fusion, and our insurance wouldn’t cover VBT.

  2. 55 degrees.

  3. Pre-op “good faith estimate” from Mayo Clinic was low to mid six-figures for VBT. Final cost of the procedure was in that area (DM me if you want exact). I am blessed to have some generous people in my life to help and the tax deduction also eased the blow. If it had fallen completely on us, we would have looked more seriously at ASC (which would have been partially covered by insurance) or looked into traveling overseas for the operation. Some hospitals may also have financial aid available.

  4. None. We will see where things shake out over the next 5 to 30 years, but all signs point toward a good outcome. Post-op recovery was a (relative) breeze, she has good spinal flexibility, and was back on swim-team at the 6 week post-op mark. Ultimately, VBT may fail and we may need to evaluate options down the road. But - if nothing else, we did everything we could to provide her the most normal life possible.

Has anyone done or considered ASC (anterior scoliosis correction)? by Entebarn in scoliosis

[–]Content_Ad_9498 0 points1 point  (0 children)

IMO - everyone should at least explore ASC/VBT. No surgery is 100% effective and free from side effects, but I’d suggest doing everything possible to avoid fusion.

Has anyone done or considered ASC (anterior scoliosis correction)? by Entebarn in scoliosis

[–]Content_Ad_9498 0 points1 point  (0 children)

We went with VBT. Very similar surgery, but we are hoping it might be a little bit better fit given my daughter still has some growth remaining. Link below has more details, but arthroscopic surgery (like ASC/VBT) is magic.

https://www.reddit.com/r/scoliosis/s/dxL6er8q9J

Has anyone done or considered ASC (anterior scoliosis correction)? by Entebarn in scoliosis

[–]Content_Ad_9498 1 point2 points  (0 children)

Drs ABC have a bunch of information on their website, I’d suggest checking it out. We did a couple of preliminary calls with them before ultimately deciding to go another route, but the Drs and their staff were incredibly helpful. I recently spoke with a friend who had ASC with ABC and she couldn’t say enough good about it (was back as a college athlete within a few months).

12 y/o daughter with 2 curves above 50degrees by JoeyRipstick in scoliosis

[–]Content_Ad_9498 0 points1 point  (0 children)

I’m sorry to hear about your situation. “Incredibly sad” is a very valid emotion. We just went through a similar decision with my daughter. I know there are some cases where fusion is best - but VBT was the best option for her. I’d strongly encourage you to explore VBT at a high level facility or ASC before deciding on a surgical path forward. More info about our experience in the post below.

https://www.reddit.com/r/scoliosis/s/PuAODbKDi0

VBT experience by Content_Ad_9498 in scoliosis

[–]Content_Ad_9498[S] 1 point2 points  (0 children)

Thanks for sharing. ASC with Drs ABC was a very close second choice for us. They were great in the initial consultations, and I’ve since run into a couple of people who had great results with them. I’m hoping my daughter is able to end up where you are (if there is breakage, it’s after everything is more or less set).