My appt with the Mayo Clinic in Jacksonville is coming up @ the end of Dec, FINALLY!!!
I was wondering if anyone has questions for me regarding my RSD (4 yrs now). I was in remission then came out after a car wreck. The last injection I had didn't work at all & now my RSD has spread up my left leg and is starting in my right foot.

Any "Pre-info" questions regarding treatment would be greatly appreciated.

Peace to all!

Renee'

Dear Renee' –

Hi. I was seen twice by RSD specialists in the Mayo Clinic, Rochester. The first time (2002) was a disaster, I had used some contacts to get in early - 8 months into the affliction with a peripheral neurologist of some repute, who told my despite my pain and my obvious response to blocks that I didn't have RSD/CRPS because they could not see (at that time) the necessary "objective findings." Little did I know that she was putting the finishing touches on an article concerning the incidence of CRPS in a population of approx. 100,000 people which used fairly rigid selection criteria. So rigid in fact that it was debunked in a major study published a few years later.

The second time (2006) I was seen by one of their key CRPS/RSD treating physicians, while I was “going through the Clinic,” largely on other concerns. By this time it was obvious that I had it, but there was nothing they could do for me, such as an inpatient ketamine treatment, where they required that all of their pain patients live in the immediate area for purposes of follow up visits, etc.

So to the extent you can stress that getting to and from Jacksonville is but a hop, skip and a jump, it would work in your favor. That and be sure to have copies of all of your test reports to date (or as many as you can) with you when you go in.

Sorry that I don't have more specific information on what Jacksonville is currently doing in terms of treatment. What I can tell you is that you will first have your history taken by a clinical fellow, before you see the consultant. In that regard, you should feel free to ask your own questions, which you should write down in advance.

And one of those questions may be how the relatively recent determination that CRPS (like Parkinson's disease) is an affliction of a "'thalamocortical dysrhythmia" (TCD) is effecting the treatment options the Mayo Clinic is now considering?

For more on that last point, see, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul; 150(1):41-51, Epub 2010 Mar 24 FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf While the article from the NYU group headed by Rodolfo Llinás - he is one of the top neuroscientists on the planet - may be difficult to follow, the Commentary that was published with it in Pain is far more readable: Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul; 150(1):4-5, Epub 2010 Apr 14, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf (And thank you, RSDSA.)

Good luck!

Mike


ps True story: I had the pleasure of hearing Dr. Llinás lecture at UCLA on "The Objectification of Subjectivity," on October 19th, essentially on how with a MEG reading it was possible - by the specific pattern of the TCD - to diagnose not only a patient's dysrhymically based illness, but how the patient felt about, without any further information whatsoever!

In the reception afterward, I introduced myself as a retired attorney with CRPS and thanked him for his work on it earlier this year. He said he was glad that the work was appreciated, to which I replied that the best part was really the beautifully understated first paragraph of the accompanying commentary of Edward Jones, to which he started to chuckle. Then I added "It was essentially a message to the pain community that they would have figured it out ten years ago if they had read the frig-gen literature!" At which point he doubled over in convulsive laughter.

That (IMHO) is one of the problems in neurology and neuroscience today. There is too much compartmentalization, on account of which even the best pain specialists at the leading universities are not keeping up with the specialized literature in other communities, in this case, the electro-physiologists who perform EEGs, day in, day out.

pps I am informed that when applied specifically to the brain, electrophysiology is sometimes referred to as neurophysiology, where the more general term is at times understood as applying to the study of the neuro-stimulation of the heart.

So I hope this helps... In my medical records from Mayo Clinic in Rochester MN under Autonomic Lab Reports Iam dx with RSD in my foot up to my knee.
Its hard for me to understand the paper work but it looks like I had a -Resting sweat output test -and- Skin surface temperature (drgrees C) measured using computerized inferared thermometry..? im just copying it off my reports..

What type of doctor are you seeing or is this a team approach? I have not been to Mayo but have been to Cleveland Clinic,UCLA,etc. Anyhow I bring all records to my apt,meds I am on and half been on,other treatments I have tried.
I would ask about the test results that you stated is confusing
Treatments and or meds you have heard about and ?'s/concerns about them
Any other doctors they feel you should see,physical therapy,etc
Any other symptoms concerns such as the spread,etc
Sorry if I am confused on what you are looking for. Good luck at your apt

Daniella, I am seeing 4 Dr's. Pain Management, Nuero, Physical Therapist and Psychiatrist (0f course). I go on the 28th & 29th of this month. They said to expect those 2 days but be prepared to stay for up to 5 days.

I have had ganglion blocks in the past with success. I went into remission and had a car wreck in May which activated it all over again. The blocks are no longer working and the RSD is now spreading up my left leg above my knee and has jumped into my right foot. I have 3 herniated discs from the wreck and sometimes feel like I have the RSD in my back as well, but am not sure if it can get in your back. Do you know if that is possible?

I have received all of my past records and test results and am ready for the trip. I spoke w/ my neuro about the level of my pain. He has increased my meds and wants me to try to wait out trying anymore blocks before Mayo if possible, that way they can have full view of my symtomes while I am their.

I have heard about the Ketamine drip, and wonder if that is something I need. Do you know and of the Pro's and Con's of it?

God Bless you with Peace and Rest,

Renee'

Mike,
Thank you for the info, I appreciate it. I do live only about 3 hours from Mayo, so hopefully that is close enough. I hope all is well with you.

God Bless you with Peace and Rest
Renee'