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Old 07-05-2011, 05:52 PM   #1
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Angry Downhill after 30?

I am thirty-two years old and have spastic diplegia cp. I have worked for a major retailer for thirteen years, the last six as management walking seven miles a day. For the last two years I have had severe right ankle pain. I was referred to two different doctors before the decided on an peroneal tendon transfer, which I had last January. Since then the pain has continued and I have been referred to yet another doctor. I currently cannot walk without crutches and the newest doctor's idea is medication, which makes me tired, and to get a specially designed brace.
I am really tired of doctors trading me out with no real advancement except my left ankle is now exhibiting the same symptoms the right started with. I have been off work for almost six and wondering if I will be able to go back. I have spent hours online searching for a doctor that knows anything about adult cp in Missouri to no avail. I need some help finding a doctor that knows something or anyone that may be having the same problems.
I am exhausted by all the pain, frustration, and fear of losing the ablilty to walk. Does anyone know if I will get over this, or just use to it?

 
Old 07-11-2011, 12:32 AM   #2
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Re: Downhill after 30?

Seeing as no one has answered you yet, I'll try to help you out a little bit. First of all, I know very well what it is like to need help with cp while in your 30s and to have nowhere to go. I am there right now, having more problems as time goes on because of two failed surgeries done by a children's specialist. On this very message board someone did say that there is a hospital in St. Paul, Minnesota, as well as two in California, that do deal with adults with cp. If you are interested in those I will post the info on them that I found from someone else. Other than that I honestly don't know what to tell you. I think you're better off dealing with doctors who deal with ankles generally than children's cerebral palsy doctors. Emphasize that you are trying to go back to work. Let me know if you want the specialists' info or if you want to just talk. Also, if anyone else has heard of any more adult cp specialists (I'm in the Northeastern US) PLEASE post them for us!!! I can't get to the others because I have no one who is willing to fly with me.

Last edited by yankeegirl; 07-11-2011 at 12:34 AM.

 
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Old 07-11-2011, 07:19 PM   #3
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Re: Downhill after 30?

I know UCLA and the Mayo Clinic have adult cp clinics, but I cannot afford to fly there. I have emailed them and also the Shriner's Hospital to see if they know of any place closer, but I have not yet received a reply. If you have a specialists info I would gladly accept it.

 
Old 07-12-2011, 12:07 AM   #4
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Re: Downhill after 30?

This information is courtesy gracie10, who has written before on here.

Gillette Lifetime Specialty Healthcare St. Paul - Phalen Clinic
UCLA/Orthopaedic Hospital Center for Cerebral Palsy (as you already know)
Rady Children's Hospital San Diego (does treat adults also, despite the name)

Good luck! Let me know if you find out anything more. I would love to go to Minnesota if I can ever get there!

 
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Old 07-25-2011, 09:16 AM   #5
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Re: Downhill after 30?

Thanks for the information. I researched the Phalen clinic and discovered a doctor in Kansas City at the Heartland Surgical Specialty Hospital, which is about three hours away from me. I just received an appointment for September 1st. Hopefully he can fix things.

 
Old 07-28-2011, 11:56 PM   #6
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Re: Downhill after 30?

That's awesome! Good luck to you; let us know how it goes!

 
Old 07-30-2011, 10:08 AM   #7
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Re: Downhill after 30?

Hi, this is my first time on this board. i do hope that you receive the info that you need regarding a doctor-and wouldn't it be wonderful if the office was accessible! You are to be congratulated on having held down a good job all of those years-is there any way that the company can give a sit down job. All that walking seems excessive even for people without the underlying problem. My daughter is 54 and has been looking long and hard for work and we could use a doctor in Las Vegas that has accessability built in. God Bless

 
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