View Single Post
Old 07-27-2012, 12:18 PM
sophiatree sophiatree is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
sophiatree sophiatree is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
Default

Ohh, I'm in southeast, Michigan. I have a team of doctors- from two different hospital systems and a private practice. It took me over 7 years to get a diagnosis (it didn't help that I was in Maryland when I first started the process)- and another two years to build a decent team of docs.
I would be glad to give you some names but I should find out a little more about what you really are looking for because it's a lot of info

1- First off, my family doc. She is the rockstar co-leader of my health care strategy (I'm the boss). She is a family/women's doctor but she was a surgeon at UofM for 19 years and has lots of experience in pain management. I used to have my CRPS specialist do all of my pain med management but now I have my family doc handle ALL of my prescription coordination so that I have no worries about overdose or interactions. The problem is that she currently only sees women and I have no idea if you are male or female but I know I could get a recommendation from her for you, either way. The other thing is that she doesn't bill to insurance for you: you have to submit your own insurance claims which also means that she is almost always 'out of network' and thus more costly upfront and little more costly overall. WORTH IT, though- to have someone to contact in the middle of a major flare- who understands the nature of how your CRPS presents.

2- My CRPS specialist tracks the progression of my CRPS in my original injury site. He does NOT track spread or other symptoms caused by CRPS. He is really good for nerve blocks and giving a baseline status of your CRPS limb/s. He can prescribe medications but although he sees his CRPS patients on average every 6 weeks, he studies the disease more than the patient and therefore I am not comfortable having him manage my medication now that he helped me find some treatments that my family doc can manage from here on out.

3. Orthopedics...I have three. I need different types of orthopedics depending on their specialty and my involved body parts. You probably have a hand specialist? If you are looking for a different one, I would recommend checking out both UofM and Oakwood hospital systems and I can give specific names if you like.

4. Rheumatologist/Neurologists, etc...these docs I generally see only 1-4 times per year. They are there more to make sure that other changes in my brain, spine, or chemistry are causing my increased symptoms. Every time i have a major flare, it sets a new baseline of disability and therefore these docs need to make sure it's CRPS as opposed to RA or a spinal injury before I begin new treatments.

5. Physical therapist/s...the difference between living life in a rigid ball and living life. Do you have one you like?

6. Have you tried trigger point injections? These bring my initial injury site from a 10 to a 9 for up to 3 weeks at a time. If you developed CRPS recently, they COULD cause remission... how long have you had this?

7. Lots more:

Can you tell me more about where your CRPS is located, what treatments have helped at all, what medications you do/don't like? I can give you specific doc names, then Maybe we can have a southeast MI support group My favorite treatment is physical therapy on my horses...



Quote:
Originally Posted by anne523 View Post
I am desparate...seeking a new MD than known anything about RSD and that can manage and get me on the right track. And the next question is just whay type that may be. I had wrist surgery in April of 2011 (after an injury in Feb. 2011). After developing RSD the hand surgeon didn't want to acknowledge it and mumbled a few things..I didn't think anything of it. After a routine visit to occ. health (this is a work injury) I was asked "what are they doing for your RSD" I was stunned and told to go home and do research and we would talk later. The original hand surgeon is out of the picture..long story and I was told by disability mgr and case manager to find a new physician. I was given at least 2 dozen names...hand surgeons, neorologist, pain management PMR and told to find someone. Further surgery was mentioned, but don't want to go there now. I have had consults with a couple pain management MDs....who wanted to do immediate stellate ganglion blocks, and I had driven myself. I was told not a problem I could drive home soon after, needless to say I didn't have one done. Finally saw another MD who at least explained things and gave options, had block done and flared further...not the result I expected. His answer was an immediate rhizotomy and given a web site to view and let his staff know if i wanted it..and no further appt until I agreed to procedure. There has to be someone out there I just haven't found yet. I am in southeastern Michigan..just north of the Detroit area. Anyone with any suggestions???
sophiatree is offline   Reply With QuoteReply With Quote