Hip Surgery and or Leg Amputation

bocciakid

I’m a 40 year old guy with cerebral palsy, which in my case means I am a wheelchair user where my right leg and arm is mostly affected. My right hip is extremely arthritic and the pain also causes severe tightness in my hamstrings, restricting my mobility and in turn restricting my independence, sex life and is now causing weight gain etc.

Botox and steroid treatment have become non effective, so I have seen 3 different orthopaedic consultants to see what other options are available to me. The consensus seems to be simply to remove the top of my thigh and femoral head to reduce the pain etc. However this will leave my leg “floppy” and be of no use to me in my opinion in my quest to regain a level of mobility, by which I mean to be able to transfer independently, use a hoist for bathing and toileting, be able to move on my bed and possibly regain the ability to dress / undress myself again.

In my humble opinion it would make sense to amputate my leg somewhere above the knee as well as removing the femoral head etc, which in my opinion would make me more mobile! However all the Consultants are not in favour of doing this, sighting that it would adversely affect my sitting balance. This would appear to me to be a poor excuse and they all refuse to acknowledge to me that removing my femoral head would also affect my sitting balance!

I want to make it clear that I have given this idea considerable thought and I believe the benefits of having an amputation far out way any aesthetic issues of which I have very few.

So my reason for writing / posting is to ask the following:

1. Do you have any information relating to how such an amputation with and without removing the femoral head etc affects sitting balance and how people compensate / learn new ways of sitting and transferring etc?
2. Do you know any people with CP who have undergone such a procedure, where documentation exists and or would be happy to talk to me?
3. Do you know if I have any rights to insist on this procedure being done and how I would go about it etc?

Many thanks

Dean Thomas

julie47

Hi bocciakid

A warm welcome to the forum from me.

I am sorry that you have such a difficult decision to make although you seem to have made up your mind of having an above knee amputation.

I have a below knee amputation and have had this for over 6 years. I am now 48. This for me was a massive decission as I was riddled with RA and I wondered how was I going to cope. In my case this was the best option for me as the problem would have kept recurring.
I can honestly say at times it has been very hard. Especially transferring, because my wrists are not strong and my hands are deformed. I have no upper body strength.

I can understand you wanting to have it amputated because you say it will be floppy and of no use, but please think really carefully about this.
Are there no CP organisations that could help you with this?
Or perhaps could your gp help you find information.

I have tried googling this query but I can't seem to find anything, But then I am not too good at google, You may be better.

I hope someone else will come along and try to help you. Sorry I have been of no help

Good luck
Juliepf x

dachshund

Hi Dean.
my sister and i have cp. my sister is a wheelchair user she has tightness of the hamstring she goes to the gym once a week for massages on her legs and she uses the wheelchair on the rowing machine as it fits over the seat this keeps the hamstrings lose and it also keeps her weight down and it keeps you fit.
sue xx

bocciakid

Thanks all, you have been helpfull. I do think reving the top of my thigh as well as having a high leg amputation would work for me buts its convincing the Medics!

barbara12

Hi Dean
Im so glad you have joined us, we do like to support one another, I do think you are really brave coming to such a decision, I think the consultants should listen to you , and take on board what you are saying
Do they refused to do the op, or do they think you will be know better off with it.
I really wish I could offer more help, but I do wish you well with everything, and I hope you stay with us, then we can support you .
Take care

bocciakid

Thanks Barbara. I trying to get some anwers to the q's but they are not very free with information are they!

valval

hi sorry but have no answers for you i do know at least one of our posters has had both legs amputated from above the knee but she does not post often will see if can scare her up as there are a few things you will need to know val

hileena111

Hi Dean,Welcome to the forum....I'm sorry I can not help you.
I have OA in hips and lumbar region etc etc and have had a replacement hip and thats it. So I dont know anything about your situation. What abouth the help line {on the front of the site} if they cant help could they point you in the direction of some help? Worth a try. As someone said ....what about cp groups ......can they not help out....Sorry that sounds as if i'm trying to get rid of you and I'm not.....please post again and let us know what you eventually decide
Love
Hileena

bocciakid

thanks. i have contacted the helpline here. My own Scope couldn't help! You are all really nice here. Thanks for repkying.

stickywicket

Well, there’s no arguing with your courage, Dean.

I’m speaking from a position of pure ignorance re CP though I have both THRs & TKRs. I presume they can’t do a THR because your muscles around the hip would not be strong enough to hold one in place.

I’ve no experience of femoral head removal but wonder why you disagree with the opinions of 3 separate consultants about amputation adversely affecting your sitting balance. I’m sure you know your own body well but I guess these guys are well experienced in what the human body can/can’t do. I’m also sure I’ve heard that amputation above the knee is a far different proposition from amputation below. I don’t know why.

I’m sorry, Dean, but I can’t really answer any of your questions. I do feel that, given that 3 surgeons are against amputation, you might struggle to find one prepared to do the op.

Like Julie, I think I’d try googling to see if you can find a surgeon in the USA who might have done this op. They usually have a more can-do attitude over there but that doesn’t mean to say they get good results. Have you tried the Scope website’s own forum?

I hope you can get some answers.