I’ve decided to do this post very early on after already mentioning my planned amputation in my introduction post. In this post I want to try and simplify my condition so that more people understand what myself and others are going through as its not a massive one that many people talk about. Again, a little disclaimer before I begin, I am not a doctor, I do not know medical terms or reasonings, I only know what my own experience has shown me.
What is Fibular Hemimelia?
This is a birth defect where part or all of the fibular bone is missing, as well as associated limb length discrepancy, foot deformities, and knee deformities. For myself I was born with the condition in my right leg. I had a leg length discrepancy and a deformity in my foot, also meaning I had only 4 toes on my right foot just to add to the mixture! Fibular hemimelia is a very rare disorder, occurring in only 1 in 40,000 births. It is not known to be genetic it is just by a random choice.
Where it began for me.
I began operations at the age of 2, it was always said that my leg/foot would never be “normal” but that my hospital would try their hardest to get it close to that. To cut a long story short, 15/16 years on from then my leg/foot is not even close to normal and the stress of trying to get there has been unreal!
Is it “normal” yet?
Coming up the the age of either 12 or 13 I was soon to be discharged from my hospital as they saw that their job was done and nothing more could be done until I mentioned the pain I was getting in my foot. I should also explain that I had only had operations to lengthen my leg at this point, I had never had an operation to fix my foot.
From there are I was referred to another doctor who was amazing, I think he saw me as bit of a project, he told me about all the things he could do to my foot and even spoke about adding on an extra toe!
Although my new doctor was amazing I was a little bit gutted that not so long ago I thought it was over with hospital appointments and operations and now I was told about an operation that I desperately needed and how I would be referred to another hospital miles away from home because they had better after care ,with another new doctor because he was the best and he definitely was .I can say now though he’s definitely my favourite. If I could award that man officially for being the best doctor ever I would. This next operation was to include an external fixator, after viewing images online ( because this was something I hadn’t heard of) I just wanted to cry. A young girl entering teenage years having a massive metal frame round her leg with pins going through her bones, stretching the bones and reconstructing her foot was just something that I never imagined myself going through. I did though. 8 months in total it stayed on. 8 months of complete hell I must say and not only for me but for my poor mother who was dealing with the stress of a teenager (which is hard enough already) a full time job and being a single mum and countless other jobs, I took her for granted she did a hell of a lot for me! It brought us a lot closer ,she’s now besides Amira my best mate, we both to this day will never know how we got through it However we were lucky enough to have the friends and family and the support that we had, otherwise I don’t think we would have gotten through it. I also did find someone who was also going through the “frame life” and had experienced every pain and mood that I had, her name was Jordan. She was so so lovely to me and made me feel that little bit more normal knowing how I had felt someone else had as well and that it was okay.
It’s been the most difficult thing I’ve had to face in my life so far.
After the frame was removed I had believed then there would be no more operations and that was it! My new life could begin!
Oh how wrong I was. After only a few months of everything being off, my frame the cast the supports , my foot decided to go back to how it had been before. At first the pain was something I could deal with, eventually it got worse. I was told of exercises I could do to help and take painkillers but what the doctors and nurses and whoever else I ever saw were not understanding was that no amount of exercises or painkillers we’re going to change the fact that my foot was very very deformed and becoming more impossible to walk on everyday. My right foot turns inwards and only parts of it actually touch the floor so walking anywhere is an absolute mission.
So finally after so much rambling (you were warned) we’ve reached amputation. For years I have always asked for amputation but because of how young ,I was ,I was never taken seriously. However, after trying absolutely every operation,painkiller and exercise possible it came to my surgeons attention that I was not joking and that to me this was my last option. He then finally put me through the steps of making sure it’s what I wanted for example
- Pain assessment team– to see if there were anymore things they could try
- Psychologists– making sure they knew what I was putting myself through
- Specialised surgeons and physiotherapists– telling me the process and the after care of it all
- Wheelchair specialists- preparing me for a wheelchair afterwards
After all of these appointments my mind had not changed, I was still as ready for the operation as I was before, if not more ready! Now it’s just a waiting game to get on that waiting list. I think sometimes people think I’m strange that I’m excited to have my leg amputated but until you’ve gone through all the physical pain and the mental and emotional challenges that I’ve been put through you would never truly understand. What is even better is that I have 100% support from friends,family,work colleagues and internet friends, although some may not understand they’re still willing to be apart of my new journey and help me to where I want to be and for that I wil be forever grateful.
I apologise for how long this is, I have tried to cut it down a lot! If people have questions no matter how silly I don’t mind answering them. If you don’t want to comment I have a Twitter account
Thank you again for reading if you’ve made it this far!