Hello everyone! I am new to this site and am looking for some who are where Im at or been there done that, or anyone who has a thought on what the next step might be. This might be a drawn out post as Ive been a scoliosis patient since 1979 and have a need for as much knowledge as I can get on the subject and since Ive became an adult (I was 12 w/ first surgery) I have searched for every Doctor Ive had to be the best doctors I could find that Im comfortable with touching my spine> Ive seen ALOT of them! lol
1978: Diagnosed with 68/42 S curve by Dr XXX was placed in a Milwaukee Brace to allow me to grow some in height. 1 year later and a couple of inches taller (Im 5' 5") I was taken in for my first surgery where my spine was fused T4 to L2 with a Harrington rod placed. I spent 9 months in a body cast. Surgery was deemed a success.
Fast forward to 1999-2001 Suffering with pain in my back above and below fusion I began my journey as an adult who made her own medical choices and spent a little over a year going from Neuro to Ortho Doctors (I believe 14 in all) before I found my last doctor XXX. After all the conversations and tests we both decided to extend my fusion to T1 to pelvis with a 2nd Harrington rod and 6 "screws" connecting it all to my pelvis. Again was successful.
Fast forward to 2012-2012 I am now suffering with severe headaches at the base of my skull pretty much on a daily bases usually from the moment I wake up if it doesnt wake me up! As I always have I analyze and research and proceed as I think is the best. And right now it seems as if alot of the problem seems to be caused from the position I sleep in and probably my pillows as well but I have only been able to sleep on my left side in the same position (as fetal as you can be with an almost completely fused spine) with a pillow between my knees since my first surgery! Pain meds only help as long as I take them several times a day and only help! I dont want to take meds for pain every day and could be willing to try surgery again if it could solve the problem but am hesitant about yet another surgery on my spine.
Thanks for listening to me ramble and for all responses! Post edited by Liz (moderator). Forum rules prohibit the naming of specific doctors.