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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!