Scoliosis Surgery - Experimental
Donation protected
Kaitlyn is 14 years old. Last year she was diagnosed with scoliosis. For the last year, we have watched her back curve get progressively worse and head down the path for surgery. We have been to 3 doctors and all three wanted to fuse 5 vertebrae of her lower back. Kaitlyn in an active girl and enjoys being mobile and has a black belt in karate.
The currrent fusion 'cure' is created by inserting 2 long rods with 10+ screws and removing the discs between the vertebrae. The rods stabilize the spine and the vertebrae then grow together creating 1 long vertebrae. Obviously that is a lot of hardware in your back and a hard surgery to suffer through with a long recovery time. I have read hundreds of articles with pros and cons of the procedure and have talked to several patients first hand. Yes it works, yes there are side effects and yes it’s a long, painful recovery time after a 4-6 hr. surgery. Two patients that I talked to missed a year of school because of their pain and medications.
Kaitlyn in an excellent student in advanced classes and is taking advanced 9th grade math while she is in the 8th grade. The possibility of her missing a year of school is very tragic to all of us as she has worked so hard scholastically.
However, during my research, I have found a new solution from Israel. The U.S. has just started the FDA approval process in September 2016.
The APIFIX device is a much smaller ratcheting device that only requires 2 screws and a shorter 1 hour surgery time. ApiFix has recently been used in just over 100 patients. We have talked to the company several times and to 2 families with daughters that have had the ApiFix implant. To be honest, it is not 100% perfect, but so much better than the fusion in recovery and mobility.
The surgery is $38,000 (doctor fee and hospital), plane tickets $4,500 (daughter, mom, and dad) and $5,500 for hotels, transportation, and food. We are planning to go in the beginning of June 2017 before her curve progresses to the point that she will not be a good candidate for the procedure. We will be in Tel Aviv for a total of 2 weeks which includes pre-surgical exams, surgery, and post-surgical followup appointments.
We desperately want our daughter to receive this modern treatment so her life can be better. Since the operation will not be available in the U.S. until FDA trials are finished, we will have to travel to Tel Aviv in Israel. Our insurance does not cover non-FDA approved treatments. We are asking for money to help fund the trip. We are also proud that we are helping other victims of this horrible disease by being an earlier adopter of a potentially great treatment.
Thank you for any help. We will create a diary of the progress during the surgery and afterwards for all to see. Again, thank you so much.
The currrent fusion 'cure' is created by inserting 2 long rods with 10+ screws and removing the discs between the vertebrae. The rods stabilize the spine and the vertebrae then grow together creating 1 long vertebrae. Obviously that is a lot of hardware in your back and a hard surgery to suffer through with a long recovery time. I have read hundreds of articles with pros and cons of the procedure and have talked to several patients first hand. Yes it works, yes there are side effects and yes it’s a long, painful recovery time after a 4-6 hr. surgery. Two patients that I talked to missed a year of school because of their pain and medications.
Kaitlyn in an excellent student in advanced classes and is taking advanced 9th grade math while she is in the 8th grade. The possibility of her missing a year of school is very tragic to all of us as she has worked so hard scholastically.
However, during my research, I have found a new solution from Israel. The U.S. has just started the FDA approval process in September 2016.
The APIFIX device is a much smaller ratcheting device that only requires 2 screws and a shorter 1 hour surgery time. ApiFix has recently been used in just over 100 patients. We have talked to the company several times and to 2 families with daughters that have had the ApiFix implant. To be honest, it is not 100% perfect, but so much better than the fusion in recovery and mobility.
The surgery is $38,000 (doctor fee and hospital), plane tickets $4,500 (daughter, mom, and dad) and $5,500 for hotels, transportation, and food. We are planning to go in the beginning of June 2017 before her curve progresses to the point that she will not be a good candidate for the procedure. We will be in Tel Aviv for a total of 2 weeks which includes pre-surgical exams, surgery, and post-surgical followup appointments.
We desperately want our daughter to receive this modern treatment so her life can be better. Since the operation will not be available in the U.S. until FDA trials are finished, we will have to travel to Tel Aviv in Israel. Our insurance does not cover non-FDA approved treatments. We are asking for money to help fund the trip. We are also proud that we are helping other victims of this horrible disease by being an earlier adopter of a potentially great treatment.
Thank you for any help. We will create a diary of the progress during the surgery and afterwards for all to see. Again, thank you so much.
Organizer
Desperate Parents
Organizer
Sandy Springs, GA
