Originally Posted by dailygrapefruit
My 11 yr old daughter has been diagnosed with CRPS and is in severe pain (10+). As she was just diagnosed three weeks ago, we are desperately searching for help. She is unable to do PT because the pain is so great. Is there anyone that has dealt with this and found success in the Phoenix area? (We live in Mesa.) I would so much appreciate any recommendations for doctors, hospitals, programs, etc... that you have had good results with. Thank you.
I am so very sorry about your daughter. I live in Phoenix area. I have seen 3 neurologists here- one since passed away. I got rsd 1996 while living on west coast. moved here in 98. was diagnosed on the west coast-maybe in 2001. then came back here and saw neurologist. then also saw orthopedic hand specialist. both neuro and ortho confirmed diagnosis. I had my left hand frozen like a board and had pt with hand drs. pt group. I was extremely happy with his therapists and his care. Both the ortho and his therapists were eperienced with rsd and felt they understood the condition. He was in downtown Phoenix. Regained partial use of hand. Because I went so long undiagnosed, never got full range of motion in fingers. But very happy with the gaining the partial reuse of hand. I have full body RSD with internal involvement.
My 3rd neuro. has HBOT in his two locations. One is in Scottsdale and the other in north Phoenix. He doesn't take insurance and is $250 an hour just to see him. He is a neurologist, psychiatrist, and Internist. I saw him for 5-6 years. He managed my care for 5-6 years. I no longer have electrical shocks and full body tremors. I feel the high doses of neurotin-3200 mg. helped me to get better. I went off the neurotin about 3 years ago.
There is a nice group that meets monthly for rsd support group. The monthly support group meetings are at St. Josephs hospital. I haven't been in a long time.
If you go to RSDSA.org and type in Phoenix, AZ. it will show name and phone number of contact person.
I know how scared you are. If you would like names of my neuro or ortho, I would be happy to give them to you. Just give me your phone number and or e mail and I will contact you.
The Mayo Clinic off Bell and 56th St. did clinical trials on Ketamine back in the 90's. Dr. Swartzman, Dr. Correll, Dr. Harbut, and a couple others. They since have moved on to other parts of US and gone back to Australia. etc. A few years ago, when I tried to find someone experienced in RSD at Mayo here, was unsuccessful, but that may have changed. Also was unsuccessful in finding someone experienced at St. Josephs, but that may also have changed.
There is a pain group in Scottsdale that may have some experience with RSD. I recently checked out the group. One of the Drs. used to be at the Cleveland Clinic mentored by Staton-Hicks who is a well known respected RSD Dr. I believe there is a pediatric wing for RSD at the Cleveland Clinic.
Who diagnosed your daughter? someone here? what kind of Dr.? did you get any referrals from this diagnostic Dr.? where does your daughter have RSD? Research as much as you can about RSD. You will find so many helpful compassionate friends here with tons of experience.
Physical therapy is not easy, but I am so grateful that I endured the torture. Even before I was diagnosed with RSD, I underwent about 150 treatments for frozen shoulder-first the left side, then later the right side. (It was really RSD- but not diagnosed at the time. Also underwent massage therapy, before the PT. I regained use of both shoulders and got range of motion back. A tens unit also helped me. I no longer=afer 15 years have sensitivity to touch. I still have pain, but nothing compared to the way it was at the beginning.
Hopefully this gives you hope- do you know how your daughter got RSD? an injury or surgery? Keep us posted on how you BOTH are doing. loretta