Hi everyone! Today I’m going to be talking about why the Syme amputation and knee fusion was the best decision for me and my case of PFFD. It was probably one of the best decisions I have ever made!
What is PFFD?
Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.
Because of this condition, I personally have had to wear a prosthetic leg from birth, and undergone operations to fix the deformed leg including having the foot amputated.
Useful info before reading:
When you are born with PFFD, there are usually 4 options:
Links will appear in blue
- Leg lengthening treatment (Not available to me as my case was too severe)
- Knee arthrodesis (knee fusion) is a common surgical procedure for children with PFFD. Among several advantages, it enables a longer and more efficient lever arm and a residual limb that fits better within the prosthesis. Often performed at the time of knee fusion, amputation shortens the new lever arm. Syme amputation is commonly performed which allows for an immediate postoperative prosthetic fitting. This is the surgery I chose.
- Rotationplasty (I decided against this as personally I did not like the look of it – but I was also told by my surgeon that rotationplasty would not be as beneficial to me as the knee fusion and amputation)
- Have no surgery and continue having a prosthesis with room inside for your foot (as pictured at the top of this post – my prosthesis before my amputation stuck out at the top as you can see and was quite bulky, also unable to bend at all)
Before my surgery:
Before choosing to have my surgery, as I’ve mentioned previously my prosthesis was completely unable to bend. Many everyday things started to get much more difficult without having a bend in the prosthesis especially as I was starting to grow!
The prosthesis before my surgery also had to stick out very much at my thigh due to my knee joint being at the top of my leg.
My parents were advised to let me have the surgery very early on in my life but they just didn’t feel comfortable making such a big and life altering decision so soon.
My parents found it understandably difficult to envision how I’d feel in the future despite surgeons and many doctors around the UK telling them it would be in my best interest for future prostheses.
To put it simply when I was young they saw their Amy happy, smiling, getting around fine and being able to keep up with all the other children around me despite having a ‘little leg’! They couldn’t bring themselves to to put me through such traumatic surgery so early.
At age 8, I decided after countless meetings with doctors and my surgeon that the best thing to do for myself and my future was to have the amputation and knee fusion.
Of course as you can imagine it was a hard decision..I loved my little leg and little foot; they were a part of me – but I just had to think of my future and really face up to the problems I’d started noticing i.e struggling to get into cars as I couldn’t bend my prosthesis, my prosthesis being really bulky and heavy to walk with and only being able to wear very certain types of clothing that fit over it comfortably.
I was extremely nervous about having surgery but I have to admit..I was also so excited at the prospect of having a prosthesis that would make everyday tasks easy for me again.
I also couldn’t wait to have a prosthesis that was more aesthetically pleasing and that would have an option to bend if I needed it to!
It was comforting to know at the time that the huge decision I was making would enable me to have a much better life in so many ways, holding onto this thought made me brave enough to face surgery.
How I feel now:
I do not, and have never regretted choosing to have the amputation and knee fusion.
This huge decision I made at the young age of 8 has enabled me to have a prosthesis that bends at the press of a button! getting into cars and sitting down in general now is so incredibly easy and a million times more comfortable than It ever was before!
My prosthesis is also better cosmetically since the amputation as the knee was also fused, so the prosthesis does not have to stick out so much at the top of my thigh to make room for the knee anymore – which has meant that I can wear many more types of clothing with ease.
I’m so very happy with the decision that I made, even at such a young age I somehow felt that I knew in my heart exactly what I was doing and that it was right for my future.
I will never take things like being able to get into cars or wear the clothes I want for granted after experiencing life with those restrictions.. they are such mundane, everyday things that it’s difficult even for me now to imagine not being able to do them.
I understand that many parents of children with PFFD out there will understandably struggle with what decision surgery/no surgery wise is best for their child.
I am in no way saying amputation and knee fusion are the best choices out there for people with PFFD, I am simply saying that they were the best choices for ME personally 🙂
Also I have left out information on preparing for surgery, my experiences post-surgery and my stays in hospital because I will cover all of these subjects in future blog posts – so keep a look out for those if they’d interest you!