Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-19-2011, 05:43 AM #1
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Default I'm going to Cleveland!!!

Woo hoo - I've got an appointment on the 29th of March to go see Dr. Samuel Samuel at the Cleveland Clinic! Now, I just have to figure out how to make the trip - I definitely can't sit up in a car for 4 or 5 hours, who I can get to come stay with my two teenage kids and help take care of our dogs and goats.

I'll figure out something though, even if I have to pack everyone up and take them with me for the day!
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Old 03-19-2011, 07:52 AM #2
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Hey I have been to CC. I saw Dr Stanton Hicks and Dr Mckale plus took part in there day program. I am not familiar with the doc you are seeing. I was from MI when I went there and made the long drive too. Cruise control is your friend and also stopping a few times. Good luck
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Old 03-19-2011, 07:58 AM #3
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Hey I have been to CC. I saw Dr Stanton Hicks and Dr Mckale plus took part in there day program. I am not familiar with the doc you are seeing. I was from MI when I went there and made the long drive too. Cruise control is your friend and also stopping a few times. Good luck
Fortunately for me, I won't be driving. It's hard enough riding, so I'll be in the back laying down for part of it.
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Old 03-19-2011, 09:05 AM #4
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Default HI

Just curious what they are going to do for you there? Is it PT based?

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Old 03-19-2011, 06:27 PM #5
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I see a doc at Cleveland Clinic Pain Management. Dr. wants to do ketamine with me but I cannot afford it. Dr. is not at all like a lot of the docs you see talked about here on this forum - has always been very nice, very respectful and open to things I bring up. Also very nice to my service dog. Some doctors don't want me to have her in the office - and my neuro tries to "play" with her - but it's more like teasing her. He bumps his stethescope on her head - stuff like that. The Dr. at Clev Clinic wasn't happy about me getting her at first, afraid having a dog to pick things up and help me walk would make me less mobile - but in fact, it has allowed me to be more independent and more mobile, not less so. Now that she sees that, and understands it, she's all for it.

I have an awful time driving the almost 3 hours to Cleveland. One thing about it, after driving or even riding that far in a car - the Dr. sees me when my pain is really up there and my symptoms are going crazy!

I wish you the very best of luck with Clev Clinic.

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Old 03-19-2011, 07:35 PM #6
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She is also very nice to my service dog. Some doctors don't want me to have her in the office - and my neuro tries to "play" with her - but it's more like teasing her. He bumps his stethescope on her head - stuff like that. Dr. Dews is always great with Josie. She wasn't happy about me getting her at first, afraid having a dog to pick things up and help me walk would make me less mobile - but in fact, it has allowed me to be more independent and more mobile, not less so. Now that she sees that, and understands it, she's all for it.
Just curious daylilyfan, where did you get your service dog and what other things the dog assist you with.

Teri
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Old 03-20-2011, 07:16 AM #7
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Good Luck with your appointment, Patti! I hope all goes well and you get the help and advice you need !

I'm heading 4 and a half hours to a hospital in Bath (UK) tomorrow. They run an intense course for teenagers with RSD and my doctor has suggested I go on it as theres little else he can do! I'm absolutely dreading the car journey as they always make my pain a lot worse but hoping i'll be able to get some help. My appointment isn't while Tuesday but were going tomorrow so it's easier for me to deal with.

Good Luck again and please keep us posted!
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Old 03-20-2011, 10:43 PM #8
Lisa in Ohio Lisa in Ohio is offline
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Good luck to you too Ali. I really hope that this program can help you. You will be in my prayers and please keep us posted, Lisa
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Old 03-21-2011, 05:42 AM #9
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Ali good luck to you if you read this before the start. I went to a similar program that I think you are going to but in the US. I had a hard time but am still thankful I went. With younger people I heard they benefit more too.
Good luck to you Patti too.
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