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 02-16-2010, 09:53 PM #1
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Default Anyone diagnosed in Arizona?

Has anyone been diagnosed with RSD in Arizona and who did you see?

Thanks so much.
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Old 02-17-2010, 03:08 PM #2
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Has anyone been diagnosed with RSD in Arizona and who did you see?

Thanks so much.
Hi Mycah, I have RSD and live in Scottsdale. I was diagnosed out of state, and when I came home, I saw Michael Powers-a neurologist. he confirmed diagnosis and referred me to hand ortho-I would need to look his name up. Where do you haved RSD?

My current Dr. of 6 years is not seeing new patients. He just opened two new clinics with HBOT. You could get in for hbot treatment. He is a neurologist, psychiatrist and pharmacologist-good combination.

Last year the RSDSA had their annual meeting at the hospital at 92nd & Shea. The Arizona Pain Center is there> The two founding Drs. are familiar with RSD. 6 years ago when I was hospitalized, that is the hospital I went to, There were people in ER and semi icu very familiar with RSD.

The mayo clinic on 56th St & Mayo Blvd is the clinic that did ketamine studies 10 years ago. I think there is one Dr. that treats RSD, but feet only. That is what I was told when I called a year or two ago. I have a friend that works for the Mayo closer to Fountain Hills in administration if you need more information.

I also can get the name of Dr. who does blocks, I believe at St Lukes Hospital. The RSD Dr. that was at Barrows Neurological Institute is now at the VA hospital. Barrows told me they didn't have an RSD Dr. but that was a receptionist, would have to check that out. I know that's an excellent hospital.

RSDSA would know which Drs. are into RSD. Ask for Jim Broatch-he was at the meeting and the next day was a full day meeting with drs.

Let me know what phone numbers you are interested in. your friend, loretta
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Old 02-17-2010, 03:09 PM #3
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Has anyone been diagnosed with RSD in Arizona and who did you see?

Thanks so much.
Oh Mycah, there are support group meetings in Phoenix and Tucson. I have their numbers also. I attend the Phoenix meetings occassionally. loretta
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Old 02-17-2010, 03:30 PM #4
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Has anyone been diagnosed with RSD in Arizona and who did you see?

Thanks so much.
Oh Mycah, there are support group meetings in Phoenix and Tucson. I have their numbers also. I attend the Phoenix meetings occassionally. loretta
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Old 02-17-2010, 08:59 PM #5
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Thank you for your detailed response. I have no idea if I even have RSD but I'm at a loss right now.

My symptoms started out as lower right abdominal pain, numb then burning lower right back pain, and fatigue. That was seven months ago. I still have those symptoms and added: sense of smell/taste/sound is hypersensitive, thin and dry skin/nails/hair, night sweats, feet/hands sweating, feet/hands freezing cold, a couple of hand blisters, fifth digit in left hand wants to curl under. In the last month my arms and legs feel as if they are burning and clothing hurts to wear. I have had insomnia for five years.

Two months ago I had right side of face, ear, eye, top of head be very painful and was diagnosed with trigeminal neuralgia. Was put on Trileptal. Then left side of face hurt so they increased this medicine. I recently took myself off of it because it made me so dopey and thought it might have been making my skin feel burned. Since then my mental outlook has vastly improved and the face pain has not reoccurred on any side but the back pain has come back with a vengeance.

I have been aggressive in trying to find a diagnosis over the past seven months. I've had a colonoscopy, MRIs of brain and complete back, CT scan of abdomen/pelvis, EMG of arms/hands, Visual Evoked Potential for Multiple Sclerosis, a lumbar puncture and extensive lab work. Doctors have ruled out colon issues, mini-stroke, multiple sclerosis, rheumatoid arthritis, lupus, thyroid issues and fibromyalgia. I've been told I might have everything from shingles to chronic depression. I've seen two rheumatologists, four neurologists and a psychiatric nurse.

My father had great care at Barrow's about ten years ago for Parkinson's. At the beginning of all of this I went to Barrow's (vascular neuro) and had an awful experience.

What is HBOT?

I am seeing one of the founding doctors at Arizona Pain Center in Scottsdale next week. Seeing my current neuro in a couple of weeks for a follow-up to my burning and plan to bring up RSD.

Thanks for your info. I'm hoping the next couple of weeks reveal something. Oh, and I'm in Tempe.
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Old 02-18-2010, 12:51 AM #6
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Thank you for your detailed response. I have no idea if I even have RSD but I'm at a loss right now.

My symptoms started out as lower right abdominal pain, numb then burning lower right back pain, and fatigue. That was seven months ago. I still have those symptoms and added: sense of smell/taste/sound is hypersensitive, thin and dry skin/nails/hair, night sweats, feet/hands sweating, feet/hands freezing cold, a couple of hand blisters, fifth digit in left hand wants to curl under. In the last month my arms and legs feel as if they are burning and clothing hurts to wear. I have had insomnia for five years.

Two months ago I had right side of face, ear, eye, top of head be very painful and was diagnosed with trigeminal neuralgia. Was put on Trileptal. Then left side of face hurt so they increased this medicine. I recently took myself off of it because it made me so dopey and thought it might have been making my skin feel burned. Since then my mental outlook has vastly improved and the face pain has not reoccurred on any side but the back pain has come back with a vengeance.

I have been aggressive in trying to find a diagnosis over the past seven months. I've had a colonoscopy, MRIs of brain and complete back, CT scan of abdomen/pelvis, EMG of arms/hands, Visual Evoked Potential for Multiple Sclerosis, a lumbar puncture and extensive lab work. Doctors have ruled out colon issues, mini-stroke, multiple sclerosis, rheumatoid arthritis, lupus, thyroid issues and fibromyalgia. I've been told I might have everything from shingles to chronic depression. I've seen two rheumatologists, four neurologists and a psychiatric nurse.

My father had great care at Barrow's about ten years ago for Parkinson's. At the beginning of all of this I went to Barrow's (vascular neuro) and had an awful experience.

What is HBOT?

I am seeing one of the founding doctors at Arizona Pain Center in Scottsdale next week. Seeing my current neuro in a couple of weeks for a follow-up to my burning and plan to bring up RSD.

Thanks for your info. I'm hoping the next couple of weeks reveal something. Oh, and I'm in Tempe.
Arizona Pain Center is where I would go. The two founding Drs. have good reputation. I also have trigeminal Nerve disorder. very painful. I went to Barrows also, but not good experience.

HBOT is a 100% oxygen chamber at twice the pressure and gets oxygen spread thruout the body. Scuba divers that come up to fast or get the bends, go into the chamber to get stablized. Some RSD people really respond to the increased oxygen-improves circulation. We take in 21% oxygen.
The VA hospital in Tampa just put in 16.

RSD was discovered during the civil war from gun shot wounds. I'm going to have treatment.

From your symptoms, it sounds to me like you have RSD. How did it start?
It's a very expensive disorder. Insurance doesn't cover HBOT. Meds are expensive and spreading is common. If you were diagnosed within the first 6 months you have a good chance of remission. I had two remissions of over a year each.

Hope this helps, loretta
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Old 02-18-2010, 03:19 PM #7
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I have been hesitating going to a pain clinic, guess it's because some have a bad reputation. And some market themselves so much that it looks like all they're trying to do is rope in some more victims.

I'm not sure how this started. I haven't had any surgeries. My job is pretty physical so I'm used to injuries coming and going. The only things that stand out are: I quickly stood up underneath my work van's rearview mirror and hit my head pretty hard. It dented my skull and sometimes when I hurt that spot will feel tender. That was probably two years ago. And the other time was I stood up quickly underneath a citrus limb that was sticking down and it got me in the upper back. That was probably a year and a half ago. I forgot about it until my dermatologist noted I had a scar there at my last appointment.

Watched one of the AZ Pain Center doctor's on a video they posted on Facebook (he was being interviewed by one of the local stations in December). He said their practice has grown so much that they are thinking of adding an East Valley location. If they can help me I would love to have some place closer to home.

Thanks for the HBOT explanation. So I'm guessing AZ VA doesn't have any? I'm new to all this lingo. It took me a while to figure out what SIP was but then wasn't very happy I figured it out.

I'm always curious about specialists and procedures that might help. Unfortunately I'm getting used to the 'I-have-no-idea-what-you-have-but-you-seem-crazy' look.

Thanks again.
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Old 02-26-2010, 12:47 PM #8
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Saw the Arizona Pain Center this week. I like them and it seems like they want to help. Mentioned RSD. They first want to pursue the disc bulges seen in my October 2009 MRIs, then if no pain relief they will start from scratch. I had an epidural in neck and lumbar regions in last couple of days. Doctor and PA did see the four 'lesions' (their word) on my R hand, R arm, 2 on R face and suggested my neuro look at these.

I'll post this in another area but am wondering how doctor's determine RSD site - x-rays, thermography, physical diagnosis?
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Old 07-15-2015, 02:15 PM #9
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Originally Posted by Mycah View Post
Saw the Arizona Pain Center this week. I like them and it seems like they want to help. Mentioned RSD. They first want to pursue the disc bulges seen in my October 2009 MRIs, then if no pain relief they will start from scratch. I had an epidural in neck and lumbar regions in last couple of days. Doctor and PA did see the four 'lesions' (their word) on my R hand, R arm, 2 on R face and suggested my neuro look at these.

I'll post this in another area but am wondering how doctor's determine RSD site - x-rays, thermography, physical diagnosis?
Resurrecting an old thread looking for help!

I am looking for a Mental Health professional in Phoenix or Scottsdale who treats RSD CRPS specifically. I have pain management already, this would be an additional doc to treat me psychologically as it relates.

Any ideas on who in the area does this and is actually a very competent doctor?

TIA
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Old 07-17-2015, 12:04 PM #10
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Originally Posted by MetaTauta View Post
Resurrecting an old thread looking for help!

I am looking for a Mental Health professional in Phoenix or Scottsdale who treats RSD CRPS specifically. I have pain management already, this would be an additional doc to treat me psychologically as it relates.

Any ideas on who in the area does this and is actually a very competent doctor?

TIA
Im in San Diego but drove to Freedom Pain Hospital in Scottsdale to get the Ketamine Iv therapy. There I met an incredible human being, Dr. Petra Peper Phd. She has a private practice location but is the Director of Behavioral Medicine for Freedom Pain Hosp.
When meeting with her I remember crying ...then a HUGE relief came over me and I said...YOU GET IT! She understands pain and all the issues we have with pain.
It is important to find a doc that fits your personality and someone you can feel totally comfortable with.
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