Congenital Talipes Equinovarus

My Story — so far.

I’ve always felt so weird reaching out to groups on the internet about this. but Hey!

I’ve suffered with severe bilateral CTEV all my life and both feet did turn in about 180-200 degrees. From birth I barely had any ankles so they were made up. My feet look horrific still to this day (kind of like baby penguin flippers from the width & length of each of them). I’ve had 18 operations in the course the 17 years I’ve been alive. the ops are still on-going from the most recent osteotomy plate removals (back in january ‘17) because of my body rejected it. Since then, the pain has been excruciating and hard to deal with, I’m currently on a trial of naproxen with paracetamol and but there’s been many in the past like, morphine, amitriptyline etc. due to being in college I wasn’t able to carry on with stronger pain relief. it sucks a lot and has most definitely led to terrible mental health issues throughout. a couple of months back I was also told that arthritis will soon set in from feet to the spine.

From how severe my feet are i currently only have a couple options left such as: steroid injection on the r ankle (because that’s the worst out of both), another fusion of the bones but that will only cause me to fall more than usual or the momento brace/amputation…

I’m currently struggling with phantom liquid puss in both ankles which is causing havoc and both of the hospitals i’ve been have no clue what it is so they’ve brushed it off 9 times out of 10…

I feel so bad for going on about it, but it’s honestly great to see a group for this.

thanks

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