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Old 07-31-2012, 07:12 PM   #1
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Angry surgery in adults with cerebral palsy

hi i'm a lady of 29 and and was wondering if anyone on here has had surgery as a adult? As when i was younger the orthopeadic consultant I was under refused to do anything, as i would need bone surgery he said he had done it before and it wasn't a success. The only trouble is I am having so much pain now. I got told by one doctor my right hip could break at anytime and hip's won't last forever, and my muscles feel tight all the time. I hardly get any sleep at night as soon as when i turn over at night my hip crack's and is agony! also starting to get a lot of pain in ankle. I do have botox injection's every six month's but don't find they are helping much now.
I just feel when we reach adult's with CP we get forgoten about.

 
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Old 08-02-2012, 09:55 PM   #2
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Re: surgery in adults with cerebral palsy

A lot of us feel that way about us - we are feeling that adult CP is being ignored. The doctors keep telling us that there is nothing that they can do. Then there are other doctors that don't know what we are talking about.

That is bad about your hip. I hope it doesn't get any worse.



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Originally Posted by berkshiregirl-2 View Post
hi i'm a lady of 29 and and was wondering if anyone on here has had surgery as a adult? As when i was younger the orthopeadic consultant I was under refused to do anything, as i would need bone surgery he said he had done it before and it wasn't a success. The only trouble is I am having so much pain now. I got told by one doctor my right hip could break at anytime and hip's won't last forever, and my muscles feel tight all the time. I hardly get any sleep at night as soon as when i turn over at night my hip crack's and is agony! also starting to get a lot of pain in ankle. I do have botox injection's every six month's but don't find they are helping much now.
I just feel when we reach adult's with CP we get forgoten about.

 
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Old 08-12-2012, 02:57 PM   #3
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Re: surgery in adults with cerebral palsy

hello everyone
I have spastic diplegia born at 28 weeks I am now 48yrs
I have just been referred back to my specialist after 17 yrs
He wants to operate to lengthen my tendons on both legs (I was seven the last time this was done)
I work full time just need to know more about operation and recovery time and what to expect
Thanks

 
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Old 02-06-2013, 06:28 AM   #4
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Re: surgery in adults with cerebral palsy

A lot of us feel that when we reach adulthood we are forgotten and actually I am part of a team making a film about that and about treatments available for adults with especially Spastic CP around the world! My boss had Selective Dorsal Rhizotomy few years ago when he was 27 and he is now spasticity and pain free! you can find us if you google the nerves of us

 
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Old 02-07-2013, 01:49 PM   #5
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Re: surgery in adults with cerebral palsy

That is great that you'll make a film about it. A lot of people should know more about all of this stuff.



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Originally Posted by girllostinspace View Post
A lot of us feel that when we reach adulthood we are forgotten and actually I am part of a team making a film about that and about treatments available for adults with especially Spastic CP around the world! My boss had Selective Dorsal Rhizotomy few years ago when he was 27 and he is now spasticity and pain free! you can find us if you google the nerves of us

 
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