Hi everyone,

I had an appointment on Thursday with my PM Doctor about Casting or using Botox on my leg to try and correct the Dystonia (foot rotation). London want to cast my leg but my PM Doctor said that in his experience, casting usually makes things worse so I really don't know what to do. The other option we were given from London (the PT program) is that they use Botox in my leg but my PM Doctor said that because of the complications I had from the nerve block and ingrown toenail removal it isn't worth taking the risk.

My PM Doctor however suggested that we have a splint made for my leg to try and keep it straight and one that I can remove if the pain gets too bad. So today we got in to see the Orthotics for them to suggest what sort of splint would help my leg - I couldn't believe my PM Doctor got me in so quick, we were spending weeks in London asking them if I could see a Podiatrist but they wouldn't let me. The Orthotic Doctor explained that because I have a pain condition as well as Dystonia, the splint could make my pain go a lot worse. He did agree to make a splint called a AFO though, it is a removable splint that should try and keep my leg in a normal position instead of being so rotated out to the side.

The Orthotic Doctor measured my leg to see what size AFO I would need and I found out that I have one leg bigger than the other - great something else to worry about!! The Doctor said that I have one leg that is about 2cm's bigger than the other. My PT was there and said that she would also measure my legs and see what she thinks and whether I need anymore input, she said that it could be that because my leg is rotated, it is making one leg look bigger than the other. The strange thing is that the girl on the PT program that I became friendly with had a curved back and posture problems and I do also and she also has one leg bigger than the other. She suffers from a conditions called Scoleosis (sp?). When my mom was pregnant with me, my Spina Bifida levels were raised but the Doctor's said that they made a mistake. Ever since I was born I have had a curved back and posture problems, it just makes me and my mom wonder whether I could have some back problem also??

I have to come back into hospital in a few weeks, go into the Operating Room to have my leg moulded into the splint whilst I am asleep so that it shouldn't be too painful. It will then take about 2 weeks to get the splint. If the splint doesn't work, My PM Doctor said that he would consider having my leg casted but doesn't want to go down that route unless they have to.

I also had some PT and the PT's agreed that my leg doesn't look any better than when I went to London on the PT program and that how the PT's have got me walking is wrong as I am limping really badly. They also noticed that my pelvis is really tight (probably from the PT) so have given me some more exercises to do. I have to still have weekly PT whilst waiting for the splint to be made.

I will keep you all updated, sorry for rambling!!

Take care,
Alison

Hi Ali You are not rambling I think it is great that you are so involved with your own medical care. Your mom must be so proud of you!!

I hope it works out for you. Please keep us posted.

Thank you so much Beth for your kind words, I truly appreciate them
I like to be involved in my own health, there's no point in trying to hide things from me, I like to know exactly what is the matter with me etc. I think it's quite good as that way I can have a say in whether I want to try a specific treatment or not.
I will definately let you all know how the splint goes.
Thanks once again!!
Alison