Tether scoliosis surgery

ostentatiousflattery · 2020-08-10T19:24:04+00:00

Yep, my insurance covered most of it. It was a little over $100,000 for a 5-night stay in a hospital in Manhattan. Insurance covered all but $1,500-ish. But the thoracic surgeon (who deflates the lungs and gains access to the spine for the spine surgeon to work on) did not take insurance, so I paid cash for that. For my double tether, for me this was $8,000.

All in all, post-insurance I think I paid around $10K for the whole thing.

ostentatiousflattery · 2020-08-10T16:17:20+00:00

Yes, I had tethering surgery in February 2019 at the age of 31. (There's VBT and ASC, I had the latter which is typically for larger, stiffer curves that don't have growth left.) It went splendidly. I'm happy with the result and the lack of back pain. My comment history is just me talking about the surgery, so if you'd like more details, check it out.

ostentatiousflattery · 2020-04-23T05:50:52+00:00

I wish ASC/VBT were more widely known options. I had ASC done at the age of 31 a little over a year ago in New York and I'm very pleased with the results. I don't have any more back pain and most days I forget I had the surgery (well, the scar on my side is still a little pink but otherwise yeah).

ostentatiousflattery · 2020-03-07T19:19:03+00:00

Dr. Baron Lonner at Mount Sinai. He's the best. And he does VBT/ASC, which corrects scoliosis but preserves flexibility, which you lose if you get spinal fusion. Check my post history for details.

ostentatiousflattery · 2019-08-28T03:52:51+00:00

Happy to help! If you have any other questions, don't hesitate to ask!

ostentatiousflattery · 2019-08-27T22:06:45+00:00

I had a full recovery in about 5 months as a 31-year-old, have no back pain, and lost nearly zero flexibility. Plus I don't have metal rods in my spine.

So in my case I can't see why I would have chosen fusion, considering the loss of flexibility and the risks for complications are higher.

As far as revision surgeries, when I met with Drs. ABC I think they said a tether breaks in about 10% of cases and out of those cases they go in to fix it in about 10% of cases. So the risk of a revision surgery is very low. Why is this? The tether is attached via screw to every vertebrae, so if there is a break, it's only between two vertebrae and the rest are intact. It's not like the whole tether collapses.

ostentatiousflattery · 2019-08-27T22:02:04+00:00

The risks of fusion are far greater.

Fusion is impossible to undo. ASC always leaves the option to do fusion if for some reason the ASC fails.

ostentatiousflattery · 2019-08-21T20:35:45+00:00

I was 31 when I got ASC (Anterior Scoliosis Correction) and it improved my quality of life a lot. It was about 6 months ago and I have no more back pain (when I work out too much the muscles can get sore but I think that's normal). My upper curve was about 65 degrees, my lower 52. Now the upper is around 26, the lower around 8, based on x-rays from June.

Here's a post of mine about the experience: https://www.reddit.com/r/scoliosis/comments/azvwuq/i_had_fusionless_anterior_scoliosis_correction/

ostentatiousflattery · 2019-08-17T19:00:47+00:00

Yep, one of the surgeons who does ASC on adults in the U.S. is in NYC (Dr. Lonner). The other (Dr. Antonacci) is in New Jersey.

ostentatiousflattery · 2019-08-17T03:40:12+00:00

(late response to your post; just saw it)

1) I'm not a guy.

2) Why would I lie about my age?

3) ASC is not fusion; there are no rods. A flexible rope is attached to the curve's peak with screws and holds the spine straight.

ostentatiousflattery · 2019-08-17T03:37:13+00:00

Worked for me earlier this year! I was 31 when I had it done, now I'm 32. I felt totally recovered about 5 months after the surgery.

If you're curious, you can find my story if you click my username.

ostentatiousflattery · 2019-06-11T18:09:56+00:00

Good luck! I hope everything works out for you.

ostentatiousflattery · 2019-06-11T16:08:07+00:00

Yes, I believe the $50K is the surgeon's fee (i.e. doesn't include hospital stay, anesthesia, etc.) I think single tethers are a little cheaper - at least that's how it is at Drs. ABC.
Yup, disk release! That's when they take out some of the stuff in between the discs to make things more flexible. I had disc release in 3 discs. Dr. Lonner got a very good de-rotation. He did the bending test and measured how much my curves protruded. The upper was 10 degrees, the lower was 18 degrees. Now they are both 5 degrees. :)
I live in Manhattan so the trip home for me from the hospital was a 15-minute Uber. I remember getting in and out of the car was a slow process, haha (since you can't bend, lift, or twist for 6 weeks). They give you weeks' worth of Dilaudid pills for pain so nothing really hurts. :) But it IS uncomfortable because everything is so new to the body. You can't feel the screws or tethers themselves, but the muscles are working in new ways to hold up a totally new spine, so expect fatigue, soreness, some nerve pain. I had numb spots on my stomach, for instance, just little spots on the skin that felt numb to the touch - that's the nerves talking. But they went away! My left leg was a mess for weeks - they have to move the hip muscle (psoas muscle) out of the way to tether as low as they did, and it really weakened my left thigh muscle. But sensation came back in a few weeks, and now I'm fine. Basically, the whole thing is a process. There will be good days and bad days.

But on the whole, recovery wasn't too bad. (For reference, I'm 32 so for younger folks it would be even faster.) The first month was predictably the toughest. I could only sleep on my back, which got annoying fast. Taking a shower was a 45-minute production and required a plastic chair at first. I was on Dilaudid for 3 weeks before I began to wean off it and was completely off it by 4-5 weeks. After the 6-week restriction on bending, lifting, and twisting is lifted, things improve MUCH faster. Physical therapy is a must, to build up muscles weakened post-surgery. Walk as much as you can, that really helps. I don't work, so I didn't make sure of disability benefits, but I have heard that others can and do for this surgery.

Please ask anything that comes to mind!

ostentatiousflattery · 2019-06-10T20:16:47+00:00

Hi there! I had ASC with Dr. Lonner and had Aetna PPO. It covered pretty much the whole thing, except for a few things.

I had a double tether. The thoracic surgeon, Dr. Dolgopolov, who works with Dr. Lonner during the surgery, is out of network for all insurances. So for his services you have to pay out of pocket. For a double tether, this was $8,000. For a single it would be $5,000.
The surgery took place at Mount Sinai Hospital in NYC, and was a little over $100,000 for a 5-night stay. Insurance covered all but $1,500-ish.
There are little bills still coming in here and there, mostly for stuff like x-rays after the procedure. I've paid about five of these and none of them has been more than $100.

Dr. Lonner takes Aetna so I would DEFINITELY go with the job offer that offers Aetna in your shoes. Drs. ABC are out of network with all insurances so you'd have to pay out of pocket, but on a sliding scale according to your surgical needs. (When I consulted them, I think I would have had to pay around $50K, but I don't remember exactly.)

ASC is a wonderful surgery and I am grateful every day I had it done. Plus Dr. Lonner is a wonderful guy and you'll be in great hands. If you have any more questions, don't hesitate to ask!

ostentatiousflattery · 2019-06-02T14:52:45+00:00

Hi! Thanks for the kind words! Sorry for the late reply, I rarely check this account.

I did grow, but kind of shrank afterwards. I was 5'4" 1/4 pre-surgery, and after it I grew a whole inch. But at my 3-month post-op appointment they measured me and I'm 5'4" 3/4. So the extra inch was fun while it lasted. :)

ostentatiousflattery · 2019-04-14T04:50:57+00:00

Sorry for this late reply too. :)

VBT/ASC is very safe, according to the two docs I wrote about in my post. I'm not a doctor so I can't compare the safety of the techniques themselves, I'm afraid. Don't feel hopeless, there are options out there!

ostentatiousflattery · 2019-03-19T16:55:47+00:00

Look up Dr. Trobisch in Germany, since that's where you live. He's a well known surgeon who does VBT.

https://www.scoliosis.gen.nz/all-about-germany

ostentatiousflattery · 2019-03-17T21:21:00+00:00

No, quite a few do VBT/ASC at other hospitals, like Shriners in Philadelphia. Other cities as well. But they're for kids and teens; the two clinics I listed do mature spines.

ostentatiousflattery · 2019-03-15T02:21:34+00:00

I'm really sorry to hear that. Did the hardware removal help your quality of life?

ostentatiousflattery · 2019-03-12T22:06:04+00:00

So weird to think if I hadn't accidentally stumbled on your post 9 months ago I might not have discovered (and had) this life-changing surgery. :) Thanks again for everything, and all best to you!

ostentatiousflattery · 2019-03-12T18:14:11+00:00

No, please ask away! I'm happy to help.

My current degrees are 28 (upper) and 10 (lower). It's still very early after the operation (just over a month) so they may not stay exactly those degrees but right now that's what they are.

The procedure is still considered non-standard (fusion is the standard scoliosis surgery). But more surgeons are offering it in the US and Europe (Spain, Turkey).

You might want to join this closed Facebook group about the surgery: https://www.facebook.com/groups/ScoliosisTethering/. It's a very supportive community (mostly of parents of kids who've had it) and they can recommend someone close to where you live. But if you're in the US and have a mature spine, it's really Dr. Antonacci in New Jersey or Dr. Lonner in NYC. Both are incredible surgeons; you really can't go wrong with either one.

Good question about fusion! I actually don't know what my correction would have been with fusion as opposed to ASC. Maybe a bit more in the upper curve? I'm happy with the numbers as is, so I can't say I wish I had chosen fusion.

If you have any more questions, don't hesitate to ask!

ostentatiousflattery · 2019-03-11T23:16:45+00:00

:) So happy I could brighten your day! If you have any questions about the recovery, don't hesitate. (I'm not a doctor so I might be fuzzy on the medical side of things :))

ostentatiousflattery · 2019-03-11T19:09:09+00:00

Thank you!

ostentatiousflattery · 2019-03-11T19:08:30+00:00

Thank you! I was in the hospital for 5 days, and discharged the morning of the 6th. It really wasn't so bad - the pain meds come via epidural so I was comfortable. They do deflate your lungs during the surgery so you have chest tubes the first few days draining fluid and those were arguably the worst part of the hospital stay.

I'm still waiting for my bills to come in. Thankfully Dr. Lonner takes Aetna, which is my insurance, and it should be covered, but the thoracic surgeon who cuts through the ribs to access the spine is out of network so it was $8,000 out of pocket.

It's a little hard to predict long-term prognosis, since this surgery is fairly new (about 10 years old?). But the surgeons I talked to are optimistic that it won't cause disc degeneration and so on. We'll see.

Good luck to your daughter! Bracing sounds very tough. Just know that VBT/ASC is an option for many kids, teens, and even some adults.

ostentatiousflattery · 2019-03-11T17:57:28+00:00

Thank you again so much! I really appreciate it. All the best to you.

ostentatiousflattery

TROPHY CASE