Want to get second opinion

[Lissy's Dad]

My soon to be 12 yr old daughter was diagnosed with +40 degree scoliosis about 1 yr ago( she also has a curve in her lower back). she has been wearing her brace off and on since. We had a doctors appt recently and found out that the curve in her upper back has gotten worse 52 degrees or so. the doctor has said that surgery will be next summer. In the interim, we want to get a second opinion. Can someone provide me with a name and location of the top scoliosis specialists. Just like most parents, we want the best for our daughter. How can i find out how her doctor is considered in the field? Any help or advice would be appreciated. we live on long island,ny about 45 miles from nyc

[MATJESNIC]

May I suggest going to Shriner's Hospital in Philadelphia?

Melissa

[mariaf]

Hi,

I agree with Melissa. We, too, are from NY (Queens) and although we are fortunate enough to have medical insurance, we still found the best care at Shriners in Philadelphia with Dr. Betz and Dr. D'Andrea. They are two of the best specialists around (IMHO).

[LindaRacine]

Hi Dad...

Oheneba Boachie-Adjei in NYC is widely considered one of the best surgeons in the world. If you do a search on his name here, you'll find dozens of threads in which he is mentioned.

--Linda

[Lissy's Dad]

thanks for responding! maria f and Melissa...If we chose to go to philly, one of my concerns would be about the ride home after surgery. would we have to extend our stay? Can my daughter ride in our car for the 3 hr drive home?

[Lissy's Dad]

thanks for responding linda..i think we will try to get an appointment with dr. Boachie-Adejei, havent googled his name yet but have seen it mentioned in other threads

[mariaf]

Hi Lissy's Dad,

My son had the stapling and he did fine on the ride home from Philly to NY. He was in a protective brace right after surgery. I don't know how the ride would be post-fusion, if that was the case. Maybe someone else can comment on that.

Good luck,

[MATJESNIC]

You could always have an extended stay at a hotel or something. They give huge discounts for participating hotels for patients at Shriner's. I wouldn't let that stop you.


Melissa

[Bamaro]

There is a Ronald McDonald House across from Shriners in Phila. where parents can stay during surgery and the during the next few nights during recovery. I dont believe there is any cost, you can just make a contribution.

[mariaf]

That's correct. I stayed in the room with my son after surgery as they will accommodate one parent at Shriners - and he was only 5 at the time. My husband stayed all week at the Ronald McDonald House in Philadelphia - it was about ten minutes away by car. We contributed whatever the suggested amount was per night ($10-20 - I can't recall). Again, it is just a "suggested" contribution. We were happy to donate as it was still much cheaper than a hotel and my husband said it was quite nice. As someone mentioned earlier, I wouldn't let the fear of travelling home stop you - you can always stay a bit longer. In my son's case, the ride home was nearly three hours and he did quite well.

[Lissy's Dad]

thanks for all your responses and advice. since my last posting, we've gone and seen Dr Boachie. in 3 months,my daughters curve has gotten worse. we've scheduled surgery for dec 19 at the hosp of special surgery in nyc. \dr boachie will be performing the surgery. we feel very confident that we have the best surgeon for our daughter. we were told that the surgery will be 3 1/2 to 5 hrs, and she'll be in the hospital 5-7 days. we'll keep everyone posted.
thanks again

[rosem]

My son will be needing surgery for congenital scoliosis. His surve progressed from the 40's to 60's in 3 months. We have an appt with Dr. Boachie in Jan but I am still looking. Our prayers are with you, please let us know the outcome, I too am very nervous about this pending surgery.

[Lissy's Dad]

hi everyone, just wanted to update everyone on my daughters status. today is dec 23rd, we are 4 days post op. her surgery with Dr Boachie went perfectly. he had to rotate her spine straight and also did the spinal fusion ( T4 to L3). My wife was able to walk in with her to the O.R. at about 8:30 am. dr Boachie came to see us 4hrs later to tell us it went well. about 45min after that, we got to see her in recovery. we havent left her side since. she was moved to her room at 10:30 pm that night. its been a slow gradual process since then. but we are starting to see the light at the end of the tunnel. They had her up and sitting at the edge of her bed, the day after surgery . she was up walking with a walker by the following day. today she walked without her walker. although i havent seen it yet, i was told that her scar is about 18inches long. she is in some pain and discomfort, but not as bad as i had thought. we are hoping to go home by monday(12/25). what a nice xmas gift that'll be. Dr boachie has been a gift for us. his office staff is wonderful, and the staff at Hospital of Special Surgery is awesome. thank god for people like these!

[tulsamom]

So glad to hear everything went well for your daughter. It is amazing what doctors can do these days. My daughter Shelby had surgery June 19, 2006 so she is 6 months post op and you would not even know that she had back surgery. She dances and runs around like any 13 year old would. She is fused from T4 to L4 and her scar is about 16 inches long but you can barely see it now. It is amazing how quickly they recover from this surgery. I will tell you that Shelby had a rough couple of weeks but by the third week it seemed like some switch came on and she was so much better. Good luck in recovery, I am sure she will do great.

Kathy
Daughter Shelby 13
44T 64L Now 10T 10L
Posterior Fusion June 19, 2006
Fused T4 to L4

[Lissy's Dad]

just wanted to give everyone an update on lissy's post op status. she is 10 days post op, and is doing fantastic !
she was released xmas day, 6 days after the surgery. she has minor discomfort and gets tired easily. she is having no trouble walking up the stairs to her bedroom, but does need some help getting in and out of her bed. she is still on some pain meds, but not as much as you would have thought. her next appt with dr boachie is for jan. 15.
just wanted to thank Linda Racine and these forums for helping us find dr boachie.

[A User Is Me]

So glad to hear everything went well for your daughter. It is amazing what doctors can do these days. My daughter Shelby had surgery June 19, 2006 so she is 6 months post op and you would not even know that she had back surgery. She dances and runs around like any 13 year old would. She is fused from T4 to L4 and her scar is about 16 inches long but you can barely see it now. It is amazing how quickly they recover from this surgery. I will tell you that Shelby had a rough couple of weeks but by the third week it seemed like some switch came on and she was so much better. Good luck in recovery, I am sure she will do great.

Kathy
Daughter Shelby 13
44T 64L Now 10T 10L
Posterior Fusion June 19, 2006
Fused T4 to L4

Hello, My son's surgery will be T4-L3/4 and I am wondering if there's any connection with lumber section's high curve and flat back as long term effect?

[LindaRacine]

Hi...

While flatback is still a possibility, it's not at all common. Flatback was a problem when the rods that were used (Harrington), weren't bent to facilitate the natural lordosis in the lumbar spine. The newer generation of implants provide for the natural curves.

Regards,
Linda