More surgery ?? Surgeon recommendation ??

[LisalisaB2017]

I am 56 year old female . I need advice . I wore Milwaukee brace 13-15 y/o had surgery at 17 Harrington rod T2-T12 . I was relatively pain free and active for years . I started having increased pain in 2010 and had L-4 L5 fused with spacer and hardware.My scoliosis is thoracic curve 11 and lumbar 12 . I have been in pain ever since . I now have spinal stenosis and Degenerative disc disease above and below lastest fusion . Dr.s say I need to extend original fusion from T12-S1 . I have consulted with Dr Sean McCance in NYC . Does anyone have any experiences with this surgeon ? Can anyone recommend any surgeons in NY / Long Island . Thanks I'm so stressed

[titaniumed]

Lisa, His stats look really good.....SRS fellow and trained at TCSC.....I take it you just started talking to him? I ask because some of us will ponder for long periods of time through many meetings with our surgeons. How many adult Harrington re-builds has he done? Does he have any revision patients that he has done that you can talk to locally?

Deep breathing always helps for de-stressing.

Fusion to the pelvis is adaptable..... I don't even think about it anymore. In elder scoliosis patients, I don't think this should be something to worry about, but I mention it since its your first post.

Welcome to the forum! Ask any questions you want.

Ed

[LindaRacine]

I am 56 year old female . I need advice . I wore Milwaukee brace 13-15 y/o had surgery at 17 Harrington rod T2-T12 . I was relatively pain free and active for years . I started having increased pain in 2010 and had L-4 L5 fused with spacer and hardware.My scoliosis is thoracic curve 11 and lumbar 12 . I have been in pain ever since . I now have spinal stenosis and Degenerative disc disease above and below lastest fusion . Dr.s say I need to extend original fusion from T12-S1 . I have consulted with Dr Sean McCance in NYC . Does anyone have any experiences with this surgeon ? Can anyone recommend any surgeons in NY / Long Island . Thanks I'm so stressed

Hi Lisalisa...

There are a lot of good surgeons in New York. The one we hear most about is Larry Lenke.

http://spinal-deformity-surgeon.com/

Best of luck with your journey.

--Linda

[organicnancy]

Hi Lisa, i'm searching right now too. I saw Dr Lenke 2 weeks ago. I liked him and his background but his suggestion was very aggressive, a total spine reconstruction for me. He said i could get a lesser surgery but he wouldn't do it, he would refer me to one of his colleagues. I've been wanting to call Hospital for Special Surgeries and keep missing them. I have a note to call on Tuesday. Dr Cunningham and Dr Kim there seem to be the go to doctors. I had met with Dr Boachie there 7 years ago and i think between NY Presbyterian and HSS, they are among the best. Please feel free to email me nehrlich2@gmail if you would like to chat more. I'm really struggling with all of it, the discomfort, pain and the general uncertainty of what to do.
Hugs - Nancy

[rmt]

I am 56 year old female . I need advice . I wore Milwaukee brace 13-15 y/o had surgery at 17 Harrington rod T2-T12 . I was relatively pain free and active for years . I started having increased pain in 2010 and had L-4 L5 fused with spacer and hardware.My scoliosis is thoracic curve 11 and lumbar 12 . I have been in pain ever since . I now have spinal stenosis and Degenerative disc disease above and below lastest fusion . Dr.s say I need to extend original fusion from T12-S1 . I have consulted with Dr Sean McCance in NYC . Does anyone have any experiences with this surgeon ? Can anyone recommend any surgeons in NY / Long Island . Thanks I'm so stressed

Lisa,
Of course you are stressed but luckily you are local to the best surgeons in the world for this type of procedure! I had a total reconstruction with Lenke 3 years ago. t4-s1 as I had 2 70 degree curves. I am 49. I have complete confidence in Dr Lenke and he will tell you exactly what you need to have done. He is known as the best so that is your comfort. I have no pain, no complications, play tennis and can do everything anyone else can do. Go see Lenke, trust his judgement and move on with your life!

[organicnancy]

Lisa, did you have surgery when you were younger or was this your first one?

[titaniumed]

Hi Nancy


Lisa states Harrington at age 17 which plants it around 1978. 40 years passes and it seems like yesterday (smiley face)

I grew up in Wayne, New Jersey and was there during that period. I am wondering who did your surgery back then? Did you go to NYC?

Funny, I have a similar story about needing the works, I tried to get my surgeon to lower the top levels and he wouldn't do it. There was no debate on the subject matter....just a look of shock from me. Go in, talk about things, try to absorb what was going to happen. My pain made my decision. Dr Lenke is a good choice....

I see that Joe O'Brien did another revision and wanted to pass along some healing vibes....


Ed

[LisalisaB2017]

I had my original scoliosis surgery at HSS by Dr Grahm, he has since passed away . I want to see Dr Lenke , he has been highly recommended . Unfortunately he isn't on my insurance and they will not work with me even though I have out of network benefits .

[organicnancy]

that is so frustrating. i had that with Dr Boachie, they basically told me last time that they didn't know how much they would bill me, it could be the entire cost of the surgery and i had out of network benefits too. So i didn't use him. I don't understand how these surgeons won't work with patients. It's unbelievable.

After many hours on the phone today, i finally got through to some people at HSS - Dr Cunningham, Dr Rawlins and Dr Kim are the 3 who took over for Dr Boachie's patients. It sounds like these 3 are the other top doctors for scoliosis and revision in NY. I'm not sure what to do. I was in tears today trying to get someone to give me some kind of helpful information over the phone and basically they all suggested i come in for appointments. My insurance has such a high deductible so it would cost me about $300-400 for each visit. I can't believe they don't have some kind of scoliosis department that gives you recommendations on who to consult with.

[titaniumed]

Lisa, I see, Insurance denial has happened here before....

Do you have any x-rays in your possession? You could forward to HSS or Dr Lonner, or Errico and have them check out your insurance. That would save a trip. You can also mention that its for a 2nd opinion which is perfectly ok. These are reasons for requesting burned copies to disc for our diagnostics. X-Rays, MRI's and CT scans.

If the doctors (Dr McCance) are saying fuse to the pelvis, chances are that any of the others will say the same thing.

Did he say anything about going in from the front, or side? ALIF or XLIF

I searched and there was one member here who was fused by Dr Grahm in 1967.

http://www.scoliosis.org/forum/archi...hp/t-7785.html


Ed

[LindaRacine]

that is so frustrating. i had that with Dr Boachie, they basically told me last time that they didn't know how much they would bill me, it could be the entire cost of the surgery and i had out of network benefits too. So i didn't use him. I don't understand how these surgeons won't work with patients. It's unbelievable.

After many hours on the phone today, i finally got through to some people at HSS - Dr Cunningham, Dr Rawlins and Dr Kim are the 3 who took over for Dr Boachie's patients. It sounds like these 3 are the other top doctors for scoliosis and revision in NY. I'm not sure what to do. I was in tears today trying to get someone to give me some kind of helpful information over the phone and basically they all suggested i come in for appointments. My insurance has such a high deductible so it would cost me about $300-400 for each visit. I can't believe they don't have some kind of scoliosis department that gives you recommendations on who to consult with.

The top docs have more patients than time, so not seeing out of network patients is one way of whittling down demand. Not that it's an excuse, but surgeons and hospitals sometimes get burned by out of network patients.

Thankfully, there are a lot of top docs in NY. Here are just a few in addition to those already mentioned:

Baron Lonner
Todd Albert
Frank Schwab
Jean-Pierre Farcy
Ronald Lehman

Good luck!

--Linda

[LisalisaB2017]

Hi I know the only possible solution to resolve pain from spinal stenosis and lumbar degeneration is to have my Harrington rod fusion extended from T12 to my pelvis . Im having anxiety choosing a surgeon who accepts my insurance . Who did you use for your surgery ? Thanks feel free to email me eiwalker17@yahoo.com thanks

[LisalisaB2017]

Lisa, His stats look really good.....SRS fellow and trained at TCSC.....I take it you just started talking to him? I ask because some of us will ponder for long periods of time through many meetings with our surgeons. How many adult Harrington re-builds has he done? Does he have any revision patients that he has done that you can talk to locally?

Deep breathing always helps for de-stressing.

Fusion to the pelvis is adaptable..... I don't even think about it anymore. In elder scoliosis patients, I don't think this should be something to worry about, but I mention it since its your first post.

Welcome to the forum! Ask any questions you want.

Ed

I don't know how to make my final choice of surgeon ! I had a consult with Dr McCance he was very thorough and answered all my questions . I'm hesitant because I don't want a cat scan myelogram ! This is his diagnostic test and also I would feel better knowing someone that had surgery by him

[LisalisaB2017]

Hi Lisalisa...

There are a lot of good surgeons in New York. The one we hear most about is Larry Lenke.

http://spinal-deformity-surgeon.com/

Best of luck with your journey.

--Linda

Dr Lenke doesn't accept my insurance 😩 , none of the Dr at HSS do either

[titaniumed]

I'm hesitant because I don't want a cat scan myelogram !

I see....why?

There is a possibility that they might want to do a CT reconstruction in which the data would be used for 3D printing a model of your spine....These new tools are invaluable for surgeons. Things have progressed quickly in this area and I am not quite sure "if" they are using these systems now. In NYC, I would say yes.

Best to ask questions through e-mail. E-mail your surgeons nurse or assistant or PA. Not too many questions at a time, just a few. Call the office and ask, they will gladly do this.

Nobody can choose your surgeon for you. No-one can know who is going to have the best result since we are all different, and because there are things that happen that are beyond even the best surgeons control....Infection, Non-Union, Lingering pain, Blindness, etc.

You will need serious surgery..... The surgeons that you have seen wouldn't offer something of this caliber if they were not trained. Mention full fusion reconstructive scoliosis surgery to any non-trained doctor and they will lower eye contact, sigh, and bend in the knees.....You will have to trust your surgeon and surgeons, and the team. They do use teams that are trained to the hilt. If you need this done, you have to let go and trust that things will be ok. Usually, if a complication occurs, patients get repaired and beyond.


Ed