[anne523]

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???

[Concerned Aunt]

I have a niece that has RSD, and it was her physical therapist that put a bug in her ear as to what she has. Her Dr is a quack. He said she had neuropathy, that was it!! She sweats profusely, her feet are swollen beyond belief, and starting to look disfigured, she lost 50 lbs without trying. She is in so much pain that I can hardly visit her without crying. I hate hearing of anyone having this horrible thing, I'm sorry you have to go thru this. As for Dr's my niece needs one also only in the Indianapolis area.

[Heather Rae]

Originally Posted by anne523

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???

Hi~ My name is Heather. I am from south-east MI too..south of Detroit. I was injured in 07 in an auto accident which shattered the left patella and ended up with RSD in that leg caused some degen patellar arthritis in right knee along with cervical spine spondylosis, lumbar area nerve damage and a bunch of other stuff. My RSD wasn't diagnosed right away because the extent of the injury was so severe, many of the symptoms overlapped the actual RSD symptoms and finally the + bonescan and + results of symp nerve blocks along with + signs finally gave the final diagnosis in early 2010 but had only been under the care of knee ortho until then!! LOTS had been missed until the referrals to phys med and pain doc were underway. So, I am glad to see you have a team behind you already!! I think the most important thing is that the pain doctor you are seeing knows alot about RSD and how to treat it. Does he/she know about the latest research that's going on? The biggest thing is treating it and the earlier the better I'm told. What does that mean if the blocks made your symptoms worse versus better? Is rhizotomy the only option you have with your doctor? I would want all options on the table I think before I made a final decision too! After much searching and looking into names, backgrounds, etc I finally found a Dr who did my SCS. His name is Dr. Todd Lininger. He may have alt options for you. I sadly ended up switching to a closer pain doctor last fall because it ended up being too tough to travel 2.5 hrs each way once a month to see him though. So, the current pain doc sent me to Cleveland Clinic because I need to have another knee surg and I saw an actual RSD specialist in their pain clinic by the name of Michael Stanton-Hicks. He is recommending Ketamine infusions to try to get RSD into *remission*. Pretty smart! It worked for 24 hrs with the trial and have not had a pain-free moment in 5 yrs! Am going to try the 3 day infusions next! Dr. S also offers an online 2nd opinion if you google his name. You will see where you might be able to mail in your medical documents for review/opinion. Also Providence Hosp I do believe includes RSD in areas of interest in their pain management. I hope you end up finding a doctor to help you with your RSD too! I know what a struggle it can be espec when opinions can vary too. Phys med continues to tell me NEVER any more surg because the RSD can spread as it looks like it is mirroring in right leg! On the flip side, ortho says arthritis is bone on bone and I need a TKR. Am very grateful Dr. S stepped in now with the ketamine plan!! Wishing you the best of luck and I hope this helps!

[sophiatree]

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...

Originally Posted by anne523

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???

[anne523]

Heather...thank you for the ideas. Unfortunately I have NO pain management MD at this point. There have been a few disasters. Providence Hosp does have pain management and has dealt with RSD, but they are not taking anymore workman's comp cases (and I work for their healthcare system). Dr Linninger is a new name for me, but someone mentioned Dr Whittenberg and they are in the same office. Someone that had been there left bcause they couldn't do all she needed (including SCS). Guess I will call and ask more questions.as for the block making symptoms it is just that. Pain spread more severe all the way into shoulder thru elbow and lots more swelling, less movement of hand/fingers. OT said another flare up. This was May 30 and I am still not back to the place I was in. I was told by a few that another block could cause worse symptoms. So trying to figure where to go from here....

[anne523]

Sophiatree

I would love to get the names of physicians that you have found. I have struck out more than a few times.

My family doc recognizes RSD, but reallly knows nothing of the treatment, and being as it is a workman's comp case is hesitant to get involved. In answer to your question, I am female.
to try to sum it up quickly. Injury in Feb 2011, surgery in April 2001. Hand surgeon mumbled something about RDS..but no big deal (and my hand was at its worse then..June/July). Did my usual follow up in occ health with PA and he asked what was being done for RSD. That was mid July 2011. Referred to 2 pain management MDs and one wanted to do SGB on the spot (and I drove myself, but that was ok, I could drive home per him) I needed time to think about this and process it all. Now this physician has moved to the Saginaw area. Next referral was to a real "creepy" place. Doc there wanted to load me with meds, do bone scan and take it from there. WC denied. In Dec 2011 I had another major flare (after "manipulation" by hand surgeon at routine visit). He kept yelling at me asking "why can't you move your hand..there is no reason you can't" Since then I have fallen below the cracks in finding a new physician and not knowing exactly what I need. Surgeon, pain management and PM&R were all thrown at me...a list of @ 2 dozen names by my nurse case manager and I was told to make a decision and pick one. Long story short that hasn't worked and SGB was a disaster. So it seems to me I am starting from scratch

[Umlors]

My name is Steph and since a 2010 I have had RSD / CRPS type 1 in my right leg and then it spread to my left, I understand how frustrating doctors can be they make you feel like your crazy. Anyways 1) doctor is Derek Lado DO neurologist and PM&R specialist he works for Michigan pain consultants in Grand Rapids, great bed side manner just overall a wonderful doctor and 2) doctor he is Dr. Callahan MD neurologist and PM&R specialist very qualified as well as kind he is in Grand Haven at PCA pain clinic. Both of them are amazing, kind and just down to earth. Dr. Callahan worked under the doctor who in 1993I started a lot of the testing for RSD /CRPS I believe it's Dr.Rosenthal something like that, he was at Harvard and John Hopkins! I hoped this helps you a little