Hi John, just a few words on what I learned/encountered in my search for someone knowledgeable about TTS:
No such person exists anywhere within my world. Even my highly regarded neurologist did not want to re-do his diagnosis of CRPS, particularly since the "signs" are all there for that diagnosis. I did a lot of questioning within my community, getting names of possible "leads" but nothing panned out. Exhausting and time consuming, so I gave up that avenue. Concenrated instead on what I faced with CRPS, obtaining a qualified pain management doctor not affiliated with a medical group, and that would be In Network with my better than average insurance. Another important aspect: Had to be within reasonable (no more than 20 minutes) driving distance from our home since I don't particularly enjoy driving and face anxiety when on anything but roads; won't/can't do highways, expressways and especially will not consider a distal location. So I found a private practice PM doctor! Checked his background, etc., and got an appointment that was not 2 years into the future! Absolutely loved his warm, personable, attentive manner of interaction. He LISTENED, asked questions that made me feel assured that he actually understood. Upon examining my affected foot (and comparing to the other one), he noted the several areas of discoloration where the skin seemed almost like eczema. Also noted a bit of swelling, pressed areas that elicited pain on both sides of ankle of injured foot, took photos. He said he absolutely agreed with diagnosis of CRPS, and that he found similar symptoms in right foot/ankle/leg as well. The right side of my body had not smashed onto the concrete with the same force as the left. We had an unrushed visit in which he covered the history of what brought me to his practice. I emphasized that no, I was no longer interested in injections into the joints, and definitely not into my lumbar spine (where MRI showed that I have a great deal of issues with nerves/discs). Emphasized that I should return to PT because the affected foot/ankle area was a bit "tight" and that PT is top of the list for CRPS. So I agreed to more PT, informing him that my top-notch podiatrist had recommended the very same plan.
Thus I set about trying to get a PT center that had experience with therapy for condition that I presented. In another post here on mayoconnect, I relate what I went through trying to locate an experienced, qualified center. Not one even knew what CRPS entailed (had never even heard of it). My podiatrist had especially advised me to question because it was imperative to avoid incurring more issues inadvertently. I thus turned to the excellent therapist who had helped me with my knee issues, told him what I needed, and proposed that I provide him with info and he work out a plan for dealing with the issues in my ankle/foot/lower leg. Bottom line: Jacek has helped to bring down the 24/7 constantly burning nerve pain from a 7 to 8 out of 10 to a more tolerable level 5-6. The less burning pain is still constant (never goes away!) and the joints still feel as if super-stuffed with cotton or other "packing material", and it extends still up the leg but my anxiety level is less intense because what I now have is so more tolerable. Not that I'm happy to have to deal with CRPS, but it sure beats having high blood pressure and tense body due to coping with such incredible pain. I'll continue PT for a few more weeks. I've paid out quite a bit on co-pays for PT twice per week, several courses for various affected areas, since July 2021...Thank God that my insurance so generously provides PT and OT, as well as whatever else my various doctors have prescribed. But I am concerned about how the right appendage has developed similar symptoms, including the skin discoloration and sensation of numbness and pain (albeit at a lesser degree). Within research, I learned that it is not unusual for the opposite side of body to "mirror" CRPS, even cases of people who have had it spread to other areas of the body. Amazing!
I just wanted to fill you in, since you had been wonderful about indicating the existence of TTS months ago. Peripheral neuropathy and neuralgia are present as well, so I don't contemplate obliterating what I'm dealing with. But I am making progress, so I'll run with that. (Pun intended since there's no way I can engage in that activity!😁)
Gracias again, John. 😊