Shoulder Surgery

My pre-op appointment for my shoulder surgery was yesterday (Monday). I also saw a pain specialist to discuss my RSD/CRPS.

My shoulder surgeon is great--very nice and informative. I feel like I can have normal conversations with him, rather than the basic patient-doctor discussions. He shows that he really cares and wants to help. He will stabilize my shoulder as much as possible. We did discuss the right shoulder (which is also dislocating) and he said I will need that fixed at some point. I WILL be returning to school in the fall so the right shoulder will likely wait until next summer.

The procedure will be open, with the incision running down the front of my shoulder. It will take a couple of hours (he wants to make sure he tightens everything really well). He is planning on bringing the bottom of the shoulder capsule to the top and overlapping it. This should keep the shoulder secure. If there are any tears he will repair them as well. I will spend 1-2 nights in the hospital and will be in a pillow sling for about 6 weeks. The typical amount of time immobilized is 3-4 weeks but because of EDS we don't want to rush into regaining motion. If all goes according to plan (surgery and recovery wise) I should start therapy when the sling comes off. Therapy will be long and difficult. Technically I shouldn't regain full ROM, but with EDS there is no guarantee. Seeing as I will NOT be returning to gymnastics, ROM will not be a focus in therapy. Once I reach a functional level of joint range we will stop and the focus will solely be to strengthen.

My visit with the pain specialist was very productive. I was prescribed a medication to help me sleep. This will NOT interfere with my Neurontin (yay for sleep). I will start taking it after surgery. I will maintain 1800mg of Neurontin up until surgery. Sometime next week (when I am feeling up to it) I will call my pain doctor and we will determine whether or not I should increase the dose of Neurontin or add another medication to take as well. I also need to start working more proactively on desensitization. My first step is lotion. There is no way to determine how long until I can progress to another "texture."

Tomorrow my dad and I are going to the hotel where I will stay until surgery. Thursday is my post-op day (knee and hip). I will also talk to my knee surgeon about my right knee and fibula and see if there is anything I can do. My shoulder surgeon did mention that it is likely I will need my right knee reconstructed at some point..but we will hold off as long as possible!

Happy EDS Awareness Month! I am currently going through the process of getting a Proclamation from the PA Governor to make May the official (statewide) EDS Awareness month! If you are interested in pursuing this within your own state please contact Ehlers Danlos Syndrome Network C.A.R.E.S (click here).