Hello everyone, I was diagnosed at the age of 26 with cmt x linked, my way of coping was to block it out. I went to see my consultant who gave the impression it wasn't a major disability and just get on with it. I saw a physio and also had some material foot supports. Over the years I noticed a slow progression, needing to wear my splints all the time and if out for longer walks I wore my blue rockers AFO's. I'm now 34 have had 3 children and still try a live a normal life.
I went to my doctor a couple of weeks ago to ask if I could finally have some help, I am not happy with my AFO's and said they have been hurting my knee and I felt that it was due to the imbalance on the ground and pushing my knee out. I also mention the pain I was in through hammer toes. My doctor has referred me to have a orthopaedic assessment. I'm hoping to be able to get some funding for SAFO's, I have done some research and think these are the way ahead for me.
I have my appointment in 2 weeks but in the mean time I walked up to get my daughter from school, I cut through a little wood, which wasn't flat but while wearing my blue rocker AFO's my knee dislocated and I fell to the ground. I can not tell you how scared I was, alone in the wood looking down to see something very wrong with my knee. Help arrived and my knee cap was relocated, I was taken to A&E been x-rayed, I have been put into a full leg brace and have a follow up appointment on Monday. They are concerned I have done more damage that will need surgery. I am off my feet but when the time comes to get back on my feet I am very scared that it will happen again. I do believe my knee wasn't right due to ill fitting AFO's, I do believe this is why my knee dislocated. Although apprehensive to have surgery I want the problem fixed and don't want to be in this situation again.
Should I be doing anything else? Is surgery the way forward? Is there any other splints better than a SAFO which aren't as big or invasive as the AFO's I've had?
Any help would be much appreciated.