[meddy]

Hi all - I am new here. We live in a rural area, far away from major medical centers. Our local doc says my husband has crps...but we want to go to someone who has more experience in this. We are looking for name or names of docs anywhere in the country who are considered the best to go to in this field. We are willing to travel "wherever", to at least get an accurate assessment of my husband's particular situation.

Can other forum members give us some names of docs who really excel in the diagnosis and treatment of RSD/CRPS? We happen to be in Minnesota...far from Mayo though. I didn't see any RSD specialists in MN Mayo anyway.

We have done a lot of research on our own, but our first and foremost important need is to find a doc who really understands this disease...who can look at my husband's case and guide us from there.

Thanks in advance! Meddy

[AintSoBad]

I see a wonderful doc, but he's in PA, not far from Philly.
He's in Fort Washington, PA.
Right off the turnpike, some decent hotels nearby. It's a nice town.

I'll be glad to give you his vitals...
OK, here we go...

His name is
Dr. Robert Knobler
Knobler Institute of Neurologic Disease, PC
K.I.N.D.
520 Pinetown Road
Fort Washington, PA 19034

215.643.9045

He used to be partners with Robert Schwartzman, @ Jefferson in Philly.
He HAS rsd. and has it managed. With his own doctors, and may I say, he IS a Genius!
He'll have tests done, and have you return, then work with your local doctors!
(This man is a true Miracle).

One issue, he takes No Insurance. You deal with that. (send your bills in), but, he's got a great staff. His wife is the office manager,
Jane Knobler.
He's the best doctor I've met, after seeing at least, a hundred, since 83, when none of them had a clue! And, lots still don't!
This man, if you can afford to travel, (But, the point is, can you afford NOT TO?) Will become an Angel to you!
Just keep the attitude right, and work with him, not against him, and you'll have the best out come you can expect. He's willing to work with anything you bring up and answer your questions. Be prepared, his initial visit IS expensive.

Bring your list of questions, maybe record the visit, but of course, be polite and let him know, at least be prepared to take notes..

He knows me as
Pete Woj (They call me Woj, or Wojy)..

Meddy, no matter what you decide to do, I think that it's wonderful that you're there in support of your husband! God Bless you. You can PM me if you wish.
Don't be afraid to use my name, call and find out all you can. He's been my primary doc for more than 20 yrs!
He has saved my life!

So, give him a call, Jane is the best to talk to.
PM me if you wish!
I've had this since '83. along with other nasty injuries.

Best to you, and Hubby!

Pete

[daniella]

What state do you live in? I have seen doctors in a few states and actually my best pain doctor even better then at UCLA or Cleveland Clinic was from a teaching hospital in my home town. The doctor was the director and I would never allow a student but often I have read on here that teaching hospitals are more up to date on procedures. I had called the pain/anestesologist dept and explained that I wanted to see who dealt with rsd. He looked at me as an individual rather then like all with rsd are the same. Some pain doctors I have seen they have what I call their thing and anyone who would come in with rsd they would suggest that. I don't like that because we do all respond different. Unless you are thinking of a specific treatment that is different. By the way welcome to the boards

[birchlake]

I would call the Mayo Clinic in Rochester and ask them directly.

I would think that a premiere clinic like the Mayo would for sure have some doctors experienced with CRPS.

[meddy]

Thank you for the responses so far. I was interested in hearing about Pete's doc....however, the down side is, paying out of pocket is, unfortunately, not an option for us...so we have to find a doc that takes insurance.

Have been in contact with Mayo..but trying to get a definitive answer has not been easy so far. I called the pain center and the receptionist says..."RSD/CRPS specialist???"....(I told her what it meant)...her response to me was like I was from Neptune.

Even if we find someone at Mayo, it still would be nice to hear from someone who may have had experience with these or other docs....I have enough experience with Mayo to know sometimes they are great...sometimes a disaster. It is not a sure thing.

Yes, I am in MN, there very well could be excellent and knowledgeable docs elsewhere in MN.

I am still interested to hear what docs others have seen, who they feel have a good handle on RSD treatment.

[SandyRI]

If you contact Jim Broatch at the RSDSA (jwbroatch@aol.com) he can provide you with the most current list of ketamine infusion providers.

I think substantially all of the docs that are in the ketamine business have a good handle on diagnosing and treating RSD and are a pretty good bet for a starting place for your search. I have been to a number of docs on the list in the northeast, and they all knew their stuff well. My current doc is Chopra out of Pawtucket, RI and I highly recommend him. But RI is a quite a haul from MN! I would also recommend Getson from Marlton, NJ, just outside of Philadelphia. One place to avoid on the list is the Beth Israel Hospital (Arnold Pain Center, Dr. Asdourian) in Boston. Their ketamine program has been closed to new patients for 3 years or so.

Often the pain management clinics of teaching hospitals of large universities or in large cities have docs on board that are board certified in pain management and anesthesiology. If there is a large city or teaching hospital near where you live, you could call and ask if there is anyone there that specializes in RSD.

The best of luck to you. xoxox Sandy

Originally Posted by meddy

Thank you for the responses so far. I was interested in hearing about Pete's doc....however, the down side is, paying out of pocket is, unfortunately, not an option for us...so we have to find a doc that takes insurance.

Have been in contact with Mayo..but trying to get a definitive answer has not been easy so far. I called the pain center and the receptionist says..."RSD/CRPS specialist???"....(I told her what it meant)...her response to me was like I was from Neptune.

Even if we find someone at Mayo, it still would be nice to hear from someone who may have had experience with these or other docs....I have enough experience with Mayo to know sometimes they are great...sometimes a disaster. It is not a sure thing.

Yes, I am in MN, there very well could be excellent and knowledgeable docs elsewhere in MN.

I am still interested to hear what docs others have seen, who they feel have a good handle on RSD treatment.

[rachel's daugther]

Dr. Timothy Lubenow at Rush Hospital in Chicago. He is a specialist on RSD and does Ketamine treatments.

[fmichael]

I don't mean to create a problem, but speaking as someone who grew up in the very bosom of the Mayo Clinic, unless you live close enough to Rochester to be seen on a regular (bi-weekly?) basis, I can't recommend the Mayo Clinic for RSD/CRPS.

It's a long story with too many components to go into here. Let's just say that they are willing to treat only those who live in the immediate area, while everyone else seems to be sent home to their doctors with letters saying they just require conservative care, when in fact what most people need is considerably more aggressive treatment. It's a bias which I believe is two-fold. First, a very long-time member of their Division of Neurology has been, for many years, a nationally known hawk against the use of opioid medication in patients with chronic, non-malignant pain. Second, the Mayo Clinic - nationally - does a lot of expert witness work for the insurance defense/workers' comp. carrier bar, and that seems to be where its heart lies when it comes to chronic pain issues.

While I will swear by the care I've received in many other ares of the Mayo Clinic, I have not had good experiences with their pain management folks - as an out of town patient - and have heard a number of discouraging stories from others.

In terms of other doctors in the state, I recall a post from about a year ago recommending someone, but haven't been able to find it. One thing I can suggest, however, is the directory of certified pain specialists, maintained by the American Board of Pain Medicine. With the exception of some notable specialist in the field who were "grandfathered in," all applicant must first complete a one year fellowship in pain medicine - after their residencies - and then sit for an 8 hour written exam. While there are other certifying groups, only the ABPM requires the fellowship.

Here's its search engine: http://www.association-office.com/ab...dir/search.cfm Please note that for each of the 32 doctors in Minnesota, each is listed with a specialty or origin, i.e. the pre-fellowship residency. As a rule, for RSD/CRPS, I would avoid people coming from a physical medicine background, and lean instead towards neurology, internal medicine, or the like, recognizing that the bulk of practitioners will have a background in anesthesiology, which is okay, but may not be great when it comes to the cutting edge stuff.

I hope this is useful.

Mike