I just wanted to update you all with my progress. Yesterday I had my second operation to remove my tissue expanders and replace with my implants. This was a much easier process and I was out the same day. My implants feel much more comfortable than the tissue expanders even at this early stage and I had a comfortable nights sleep last night. Have been for a walk in the park today and am much more able this time so it has been a nice surprise. I will have to watch my lifting etc over the next couple of weeks and the scars are a little sore but I haven’t even needed any pain killers today so am very pleased with how things have gone. I can’t really fault the NHS for my surgery, once I found the surgeon I wanted we were able to organise everything and to date everything has gone to plan, I must say my surgeon has been fantastic and I am so glad I made the effort to travel to London in order to have him. I am also due to go to Manchester next week to see Prof Evans to discuss my second MRI scan this one to go through the Signify study. Has anyone else had the full body MRI scan yet?
It has been a year and a half since I found out I had the gene defect but now I feel I have done everything I currently can do in my control and I do feel much more at ease. Going forward it would be great if medical advancement could provide us with a cure which obviously is the ultimate goal.
Thanks for the update. I’m glad you feel more at ease, and like you share the hope that we can move further towards a cure. At the moment the emphasis in LFS research seems mainly to do with improving scanning protocols, which is good but I want us to move beyond that. I’ve been working on my own research recently and hope to have something really positive to announce soon.