Surgery or not?!

I suffer from Long QT Syndrome and have had 2 ICD's implanted with unsuccessful results as my body has rejectd them and i suffer from key-Lloyed scarring which is extremely painful! My ICD was removed on 20th Aug this year and i have just recieved a date to re-implant it. Since having it removed i have felt healthier although at times i do feel shattered due to now having ME as a result of the Long QT. I am a 25 yr old female a my life has stopped due to these conditons which restricts my lifestyle. My question to you is do i carry on and limit my lifestyle, suffering pain from previous surgery or do i have the ICD re-implanted which causes more pain, scarring and a life time of very strong painkillers with the knowing that if needed the ICD is there to help!  In the past i have experienced unpleasant side-effects including my diaphram being pced by the device. I have no-one to talk to as my family are in denial with regards to my condition and i need some advice as to my next steps. please can you foward me some contact numbers of some support groups so i can talk to someone. Many Thanks, Lucy

[Brooke_38]

I am sorry to hear that you've had such a hard time. I am not sure that I would be the one to suggest which path you should take. It has to be very difficult to feel that you have nobody to talk to. I am not sure what part of the country you are from so I can only offer an online support group. There are links there that may help you find a more local group. My prayers are with you as you make this very difficult decision.

www.icdsupportgroup.org