surgery in adult’s with cerebral palsy

berkshiregirl

hi was wondering if anyone on here has had surgery later on in life i am 29 and i want to see another orthopeadic consultant and see if anything can be done. I am 29 and know recovery would be longer but my last orthopeadic consultant just didn't want to do anything as surgery i would need is bone surgery as by leg's turn in as i walk. I got told i should go to oxford as need consultant that understand's cerebral palsy. I am just so fed up with being in pain. would appreciate any comment's back

Katherine Hayward

Hi. I agree with Helen, I've seen lots of people. Some names that stick in my mind are dr Theologis (Nuffield), dr Kevin Talbot (John Radcliffe) & dr Flossman (JR&royal Berks), all very nice, patient and explain well. Every consultant I've seen has ruled out surgery for my CP due to time I take to recover from ops. I had a tough time recovering from my shunt operation (I also have hydrocephalus). They couldn't give me a good prognosis estimate, even when I was younger so I've never been operated on for my CP. I'd recommend the Royal Berks as I've been there for my eyes as am severely sight impaired (blind), wait times for appointments are quick in my experience, quicker than Oxford. I'd suggest looking on each hospital's website to, find out more about specialists by reading their info and profiles.
Katherine

panther

Hi Katherine
Dr Theologis was one of the people that I saw too. I've also seen Mr Cooke although he does foot and ankle, he has been the consultant that has done all my bunion surgery and the ongoing surgery as the complications have come up.

I wanted surgery due to tight tendons I'd had tendons lengthend as a child and couldn't see why it couldn't be done again but I was told we just don't do that kind of surgery in adults. Don't think it had anything to do with recovery times they just don't do it.
I get the feeling that with regards cp all the relevant surgery is done when you are a child then as an adult you just live with it!!

Helen

redchicken43

Ive had a tendon transfer operation and an extension of my achilles tendon to give me more movement in my left foot. It took approx 6-8 weeks to recover, but to be honest the results are not really that noticeable and in some ways it made it worse, so surgery was not the answer for me.

Botox injections plus good old fashion exercise have proven to be more of an effective solution for me. But there are downsides in that the botox can cause muscular weakness, but combine this with exercise and I have personally seen results. The botox only lasts 3 months so I have to go back to hospital frequently. Others in this forum group have also had night splints including myself and I found these to be pretty good.

The surgery I had was around your age, but as I said this was not the solution for me.

panther

Hi
I am under a consultant at Oxford because I've had to have bunion surgery done. The bunions were caused due to the way my cp makes me walk, and the cp then caused problems within that surgery. The end result has been I've had about 5 lots of surgery as each time my walking presented a different issue.
In an abke body person the bunion surgery would of only been one or two lots of surgery.

Over the years I've seen a number of consultants either in Bucks or Oxford that many I can't remember their names!! But they all say the same thing they just don't do surgery in adults to help with things like tight muscles and any of the other issues relating to my cp.

Sorry I couldn't give you a more positive reply

berkshiregirl

I was under a consultant called Mr dodd's at reading and didn't have a good experience with him as i needed bone surgery on my leg's he didn't want to do it as he said he done it before and wasn't a success. I just got so frustrated as he kept changing his mind about surgery, and i got bit depressed about it. Been told i'm gonna proberly gonna need him surgery in future. I'm just frustrated with myself for not getting referal sooner, as my consultant should of done it when i was 18. i've been told by physio's I should really have my tendon's done. I can't see why they won't do surgery on adult's if it will be helpful

panther

I had tendon surgery at 4 and was told I'd need it again at 11. At 11 they decided not to do it. Now as an adult they won't do it as they say it is not done because they can't promise good results so it's not worth doing and can actually make you worse.

I've just learnt to live with it taking various tablets to help and try to exercise and also rest more as I've noticed if I'm tired things can be alot worse.

berkshiregirl

i have been told in near future i am proberly going to need hip surgery at some point. I am just so annoyed with myself wish i had got referal to oxford when i was a child, but there were no forum's like these when i was younger. Is just so frustrating as doctor i was under at reading just didn't want to do anything as i need bone surgery and it was not he specialist area. I just get fed up with living in pain. only get few hour's sleep every night as in so much pain with hip's

Katherine Hayward

Hi Helen yep I've seen mr Cooke as well. I agree completely about that . Or maybe they only operate on what they see as "challenges" to their career,
Katherine

berkshiregirl

I just think it is wrong once we reach adult age we get forgotten about! I just don't understand why surgery can't be done in adult's. Just because recovery time is longer doesn't mean it won't be a success

berkshiregirl

doctor's have tried every pain medication and nothing work's! am fed up with only getting four hour's sleep every night and feel like i am getting stabbed in hip's. I can no longer get out of the bath by myself and now i struggle to get trouser's on it is that bad.I am going to get a referal and see what they have to say

panther

All my surgery as a child was done at great ormand street it is only as an adult I was reffered to oxford because I moved to bucks.
Although it's different surgery I didn't have much choice because I was told if I didn't have it done within 2 years I would be in my wheelchair full time because I wouldn't be able to put shoes on.

Recovery was long and the way I walk because of cp threw up a number of complications despite having a really good surgeon who I know totally understand cp although he no longer specializes in it.
The result was for the last 5 or 6 years I have had surgery every year because with each complication that is corrected the effects of my cp throws up a different one.

I know in the long run having the bunion surgery has made my mobility slightly worse and it has also made my walking worse but I had no choice really and wouldn't change the decision I made.
But I think that is why doctors are reluctant to do surgery on adults it's not just to do with longer recovery times it's also down to the bigger picture of will this really help the person and what knock on effects will this have on their life in the long run will it really be worth the extra challenges they will have to face.

Could you not look into medications that may help your pain etc

RonnieH

When I was 14 I was sent to Oxford to have a Gait Analysis done before I had my achilles tendons lengthened.

That really helped me as I grew so fast and my tendons tightened up.

I'm now 21 and I've recently had both of my hip flexors lengthened to enable me to stand up as straight as possible.

I have Spastic Diplegia btw.

But as others have said pain is really an issue specifically nerve pain for me and the doctors just keep throwing different tablets at me and hope they work!!

imogen37

Hi

If conventional painkillers have done nothing to the pain, what about trying acupuncture or hypnosis for pain?

Of course there is a chance that these don't work for you either, but both acupuncture and hypnosis can work well for pain.

x

berkshiregirl

I recently saw Mr Theologis up at oxford and he said surgery should of been done a long time ago, and he recently offered it to a friend who was 36! He sent me for gait analysis and going for results on Wednesday. I got told results would be seen in the post but only got appointment letter, but someone told me you only get told before if surgery can't be done. Is this true