NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - John Hopkins? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/165621-john-hopkins.html)

Ok.. so here I am. fighting to go to JH psychological pain clinic inpatient. and mind you I have been given a clean bill of health by psychiatrist already.
this is and inpatient treatment. that my neurologist swears they are miracle workers.This fight is stressing me soooo much and Ive never seen this post before.. now I don't have Dr,s names. but it always concerned me that it was the psychological pain treatment. I seek real treatment for this pain not lessons on how to deal with it.. I mean come on how would they really know how to deal with it. they learned from a text book.sorry mini rant.. so now Ive seen this post and am scared to pieces to go here... I mean I have done a lot of research from when comp authorized me to go to mayo and columbian presbyterian . now comp rescinded the auth for mayo and colum.pres.no longer takes comp. now I see that JH is ..well not equipped to deal with RSD/CRPS patients. my head is spinning sop hard right now.. what do I do now..

I was at JH for 3 years aggressively seeking diagnosis. They never caught my CRPS and instead operated on me, causing spread. Now my CRPS is stage 4, irreversible damage.

Quote:

Originally Posted by dreambeliever128 (Post 855812)

This is for a friend. Has anyone ever went to J H. for RSD?

Ada

It was my understanding that Hopkins had an inpatient pain program that was multidisciplinary. Is this the program you were thinking about:
http://www.hopkinsmedicine.org/psych...inpatient.html

I ended up with RSD because of a very TOP dr at hopkins who did surgery on me and i ended up with worse problems then befor the surgery and she denied everything! There pain clinic is AWFUL, expsecially since they work with that paticuler dr and they didnt want anything to do with me. And now that ive been dignosed with RSD my nuero there (who dxed me) doesnt want to manage my care at all and flat out said so and told me there were no treatments for RSD and there was nothing i could do! I then started researching RSD and found that there were treatments to try and when i presented them to him he still said he would not treat me and well that was the end of him!

And hopkins can say they have the "best of the best" drs and treatment but after 21yrs of having to deal with them, there is nothing special about them! So that is why im on the hunt of a good RSD dr for treatment and thats why i have switched all my other drs in the last couple of years that i could.

Quote:

Originally Posted by musicgirl757 (Post 901115)

It was my understanding that Hopkins had an inpatient pain program that was multidisciplinary. Is this the program you were thinking about:
http://www.hopkinsmedicine.org/psych...inpatient.html

yes It is what I was told. but it is inpatient through their psychiatric ward,for addiction. it is said they will give treatment for addiction, PT, and occupation therapy. what all that means to me. not much especially since I have read what a lot of people are saying. It doesn't seem to matter much as comp is dragging their feet and my health through the mud.

Mike! Thank you! I have been away for a long time...trying to raise a baby (now toddler) and having this disease kept me unbelievably busy. I really appreciated the advice about the Search. Honestly, I am not very technologically astute! I always have to ask a teenager how to do things! :)

I didn't get your post until AFTER seeing Dr. Prager, AND being turned away from Mayo, so I can only comment on Dr. Prager now that I've seen him multiple times. He did a lumbar block and 3 ketamine infusions and none were successful with me. His only other option for me is the spinal cord stimulator, which I am not comfortable with doing. :(

Unfortunately, my CRPS has spread to all of my limbs now. I've had it since September 2011. I may try RIC or The Bridge Recovery Center in Utah. However, I appreciate the name of Dr. at USC. I will see if I can get an appointment with him!

Thanks again, Evie

Quote:

Originally Posted by fmichael (Post 859610)

Dear SonshineEvie -

You're new here, and may not appreciate that at the top of every NT page there is a "Search" button, which you should always open at a new tab so as to not loose anything you are working on, etc. Believe me, there is a wealth of information in those posts.

Had you first searched the RSD and CRPS forum under either Mayo Clinic or Joshua Prager, you would have found scores/hundreds(?) of posts, and very few of them are complimentary.

I am a native of Rochester MN, and was able to secure an appointment with their leading peripheral neurologist on RSD/CRPS, who promptly blew me off because - some 8 months into this - I hadn't (yet) displayed enough of the "objective criteria" to confirm a Dx of CRPS, EVEN THOUGH I HAD GONE INTO A 2-WEEK REMISSION FOLLOWING A BILATERAL LSB, ROUGHLY ROUGHLY FIVE MONTHS AFTER DEVELOPING MY SYMPTOMS! (That and she was oblivious to odd developments in the pattern of my body-hair and nail growth.) Little did I know that at that time she was just about to publish a major paper on the incidence of CRPS in a population of 100,000 people (Olmsted Co., MN) based on an historical review of treating records from the Mayo Clinic and the Olmsted County Medical Group: a low-ball estimate that was later pilloried and generally discredited for its overly restrictive diagnostic criteria. That, and at least since the sixties, it has emerged under the influence of one neurologist in particular as a leading hawk against the use of opioids in people with non-malignant chronic pain, to the point that the centerpiece of its pain program is an out-patient program teaching pain patients essentially how to "grin and bear it." Small wonder that the same folks have been tight with the W/C industry and repeatedly testify as expert witnesses for defendants/insurance companies in litigation. And finally, at least in recent years, it hasn't exactly been a font of new research into the cause(s) of CRPS.

Don't get me wrong, I would trust (and have) trusted my life with the Mayo Clinic in so many areas. But pain management - and anesthesiology in general - are not necessarily among them.

And as to Dr. Prager, where I have lived in LA for many years, I saw him along the way as well. There are many things I could say about him, but "legend in his own mind" comes as close as I can to summing it up. Check out the comments on Dr. Prager in particular.

Personally, and I've made no bones about this, I think the best pain doctor in town - bar none - is Steven Richeimer, MD, Chief of Pain Medicine at USC and Director of the USC Pain Center. (A place which not incidentally accepts most medical insurance as payment in full.) Having had the privileged for being treated by a lot of great and caring physicians, Robert M. Schwartzman included, I believe that Dr. Richeimer, with his double residencies in psychiatry and anesthesiology, may well be one of the the finest combinations of technical brilliance, humor, compassion and utter lack of egotism in the medical profession today.

And to the south of LA, I've also heard very good things about in La Jolla. If nothing else, her discussion of "Complex Regional Pain" (the link is on the right hand side of her homepage) should be required reading for all. For what it's worth . . .

And with that, welcome to the forum!

Mike