I had the capsular shrinkage operation in 2000 and it was fine until a few years ago. I had the capsular shift operation in january 2009, to be honest ,most of the capsule was disintegrated and it is already subluxing again. I am unable to do physio exercises because my shoulder just pops even with very little movement.
I saw prof Bird a few weeks ago and he agrees something needs to be done but explained that when you have surgery on soft tissue, the healing process normally involves collagen coming back stronger and thicker, however we(hms/edsers) are relying on faulty collagen during the healing process.
Prof Bird did say that he knew of a surgeon in Liverpool that has had a good success rate with hmsers and has referred me to him, I am still waiting for the appointment so not sure of his name. Prof also said I may have to compromise with lack of movement if I have anything done surgically. Liverpool is a long haul for me but I would rather go to a surgeon that I know has had a good success rate in these cases.
So maybe the answer is not the surgery but the surgeon! Have you asked the surgeon how many people he has done the operation on with hms/eds and the success rate in these cases?(most good surgeons will not mind you asking!)
Do you see a hypermobility specialist, was the referral done by them? If you do see a hypermobility specialist, you could always ask them the name of a surgeon that they recommend for this type of surgery.
Remember now that:
1: you have the right to see any specialist you want to, anywhere in the country - just give the name to your gp and they should refer(i see specialists in Leeds, Birmingham, Nottingham(3 different hospitals) and soon Liverpool and London)
2: you have the right to a 2nd opinion
Will PM you when I get the surgeons name.
Linzi, hope this answers your question:
A capsular shrinkage is done by heat to shrink the capsule, you can realistically get a 15-40% reduction in the size of the capsule with this method
A capsular shift is done by cutting the capsule, overlapping it and sewing the capsule back together again, this way they can reduce it as small as they want to
Hope this helps
What's normal if everybody is different?