[cuffs558]

Hi everyone,
I am new to the site but not with RSD. I was originally hurt at work in 2000 and stayed at work until being pulled out for my second surgery. However, my boss had my back surgery cancelled and that was the begining of the end of my life as i knew it. From that point I jumped through many more hoops then what was needed, then finally obtained surgery in late 03 and when i woke up there was an issue in my foot and ankle. I just remember thinking when i was diagnosed a week later RS what, as I had never heard of RSD. Now several years later I have had nothing but headaches from workman's comp and even more headaches looking for a doctor who specializes in the field of RSD. I found many trials tried many things but it all seemed to make it spread further up the leg. I found a wonderful family doctor that has other RSD patients. But I am still getting tossed around in court. The so called independant doctor who gave me my IRE did not even give me credit for pain just discomfort........... I don't even think he knows what the disease is. What an *****.... Anyway, I have been looking everywhere and finding nothing as many doctors see patients but as we all know have agendas. Can anyone help? Thank you in advance if you can & thank you for keeping me in your thoughts if you can't right now........

[loretta]

Hi cuffs558,
Have you contacted RSDSA? You can put in your zip code and they will give you the name of closest support group and contact phone number. Attending one of the meetings and talking to others, may give you some Drs. that are familiar with RSD. As my great Dr. is moving, I'm going to try the Arizona Pain Center. Most larger cities have pain management centers, and they usually have RSD cases. I attended the annual RSDSA meeting, which this year was in Scottsdale , AZ I asked around at the meeting, 135 attended and got the name of a Dr. and guess what- he founded the Arizona Pain Center. The RSDSA meeting was held at the hospital where I go to, well twice anyway.
If you give us the state where you live, or city , that would give us an idea. I know the Cleveland Clinic has RSD Drs. And Philadelphia has Dr. Schwartzman who does the ketamine infusions. A few years ago the Mayo Clinic about a mile from my house did a Katamine study. Schwartzman was one of them along with a German Dr. Australian Dr. and I believe 3 others. One of my good friends was an assistant to them during this trial.
Dr. Harbut was another one-I believe he is in Philly too with Schwartzman. There is also a Dr. in Florida that took over the practice of Dr. Hooshmand, who retired after many many years treating RSD. The website to get in touch with his successor is www.rsdrx.com
Dr. Michael Powers in Phoenix, AZ is a neurologist that I went to for a while, that I thought was very good. We changed insurance, so I had to change Drs.
Your reaction to RS what is about what I thought. I wasn't diagnosed for 4 years-after surgery. Was misdiagnosed.
Your thoughts to Pete were very good. I've been thru the court battles a few times myself-pre RSD days. Wish you well with WC. Have you tried HBOT? My Dr. just built a couple of clinics with HBOT and I'm going to try it. I see him tomorrow. Take care, loretta

[fmichael]

Hi there. You will get lots of support here, by the way.

In addition to Loretta's suggestions, check out something else I've been pushing lately:

If you go to the search engine for the American Board of Pain Management, the group that accredidates pain mgt. residencies in the U.S., also runs the most rigorous cetification process for pain management physicians. Its public directory of "Diplomates" is found at http://www.association-office.com/ab...dir/search.cfm Just plug in the city, scroll down to the state, and go.

Hope it's useful. I know that it does a good job of pulling up many of the best docs in my area. Sorry, no guarrantees as to bedside manner.

Mike

[daniella]

Hi I am sorry for your pain and struggles. Yes where do you live? The doctor you are working with that you say is clueless what type of doc is he and has he given you any meds or treatments? Are you able to travel out of state? I have seen docs in my state and out like the other poster has stated. I also wonder if you have a teaching or university hospital near you because actually the one I have now is I feel better then at Cleveland for me and of course everyone is different but I think to call the pain clinic in a top hospital in your area and inquire if they have someone who deals with rsd. Many thoughts

[ali12]

Hi Cuffs,

Welcome to Neurotalk! It is so good to meet you though sorry it has to be through RSD! You will find many great people here who i'm sure will try and help you if they can so don't be afraid to ask any questions!!

I would follow Loretta's advice and check out RSDSA's website as I have heard that they have lots of useful information about RSD and know which hospitals are best for treating it.

I am in the UK so can't really offer you that much advice unfortunately. The best doctor to see that treats RSD is usually a Pain Management Doctor as they can do nerve blocks, prescribe meds etc. Neuros also treat RSD however from my personal experience, we have found that they don't tend to know that much about RSD.

I hope you are able to find a doctor that can help you soon! It's really important you find a doctor that you are comfortable with and knows all about RSD and how to treat it! I know it's frustrating but don't give up searching for a good doctor as it will be worth it in the end I promise!!

Take care and if you ever need anything,please know that I am here for you!

[Dew58]

Mike,
I attempted to click on the site you mentioned and the link seems to be broken. Is it possible to go another route to retrieve the information?

Thanks,
Dew

Originally Posted by fmichael

Hi there. You will get lots of support here, by the way.

In addition to Loretta's suggestions, check out something else I've been pushing lately:

If you go to the search engine for the American Board of Pain Management, the group that accredidates pain mgt. residencies in the U.S., also runs the most rigorous cetification process for pain management physicians. Its public directory of "Diplomates" is found at http://www.association-office.com/ab...dir/search.cfm Just plug in the city, scroll down to the state, and go.

Hope it's useful. I know that it does a good job of pulling up the best docs in my area. Sorry, no guarrantees as to bedside manner.

Mike

[AintSoBad]

cuffs,
you've posted twice.
Yet, not really told us where you reside.
If you want help, you've gotta be here, and give us some info!

Not trying to be mean.
Just trying to help!

Help us, help you!
(Ouch, that sounds too much like a movie)!
Jerry McGuire?

pete

asb

[fmichael]

Originally Posted by Dew58

Mike,
I attempted to click on the site you mentioned and the link seems to be broken. Is it possible to go another route to retrieve the information?

Thanks,
Dew

Thanks for the heads up. It's fixed, for now.

And again, that's http://www.association-office.com/ab...dir/search.cfm

Mike

[cuffs558]

Originally Posted by loretta

Hi cuffs558,
Have you contacted RSDSA? You can put in your zip code and they will give you the name of closest support group and contact phone number. Attending one of the meetings and talking to others, may give you some Drs. that are familiar with RSD. As my great Dr. is moving, I'm going to try the Arizona Pain Center. Most larger cities have pain management centers, and they usually have RSD cases. I attended the annual RSDSA meeting, which this year was in Scottsdale , AZ I asked around at the meeting, 135 attended and got the name of a Dr. and guess what- he founded the Arizona Pain Center. The RSDSA meeting was held at the hospital where I go to, well twice anyway.
If you give us the state where you live, or city , that would give us an idea. I know the Cleveland Clinic has RSD Drs. And Philadelphia has Dr. Schwartzman who does the ketamine infusions. A few years ago the Mayo Clinic about a mile from my house did a Katamine study. Schwartzman was one of them along with a German Dr. Australian Dr. and I believe 3 others. One of my good friends was an assistant to them during this trial.
Dr. Harbut was another one-I believe he is in Philly too with Schwartzman. There is also a Dr. in Florida that took over the practice of Dr. Hooshmand, who retired after many many years treating RSD. The website to get in touch with his successor is Dr. Michael Powers in Phoenix, AZ is a neurologist that I went to for a while, that I thought was very good. We changed insurance, so I had to change Drs.
Your reaction to RS what is about what I thought. I wasn't diagnosed for 4 years-after surgery. Was misdiagnosed.
Your thoughts to Pete were very good. I've been thru the court battles a few times myself-pre RSD days. Wish you well with WC. Have you tried HBOT? My Dr. just built a couple of clinics with HBOT and I'm going to try it. I see him tomorrow. Take care, loretta

---Loretta,
Thank you for your advice. I wanted to respond to you & don't know how other then this..... which is fine but i'm sorry if it's not the proper way. I do belong to an rsd group here in Scranton, Pa.. One of the problems is the doctor has to be on a state list to give an IRE (Impairment Rating Evaluation). Besides that it seems that the doctors are not aware of what rsd really does to you as I have been hearing horror stories from everyone from the group. I hadn't really until this time but believe an agenda was being played out. (that's for another day). I did hear that I am a day late and a dollar short as there was a very good doctor who cared abt the pt, knew what rsd did to the body & who could do it but has moved out of philly and AWAY from schwartzman. I have to wait till he gets set up to see if Cleveland Clinic in Ohio has the same rules for ire's that pa does and if i can use him. I have seen another neurosurgeon in philly, he also states to stay away from schwartzman and the low dose treatments.
I have just gotten a name with ,,,,,,,,,,,,,,,,,,,,,,,,THOMAS JEFFERSON HOSP. Robert L. Knobler .......... Has anyone heard of him or his work???

[cuffs558]

Originally Posted by fmichael

Hi there. You will get lots of support here, by the way.

In addition to Loretta's suggestions, check out something else I've been pushing lately:

If you go to the search engine for the American Board of Pain Management, the group that accredidates pain mgt. residencies in the U.S., also runs the most rigorous cetification process for pain management physicians. Its public directory of "Diplomates" is found at Just plug in the city, scroll down to the state, and go.

Hope it's useful. I know that it does a good job of pulling up many of the best docs in my area. Sorry, no guarrantees as to bedside manner.

Mike

Thank you for taking the time to assist me. I will take some names and see if anyone knows of them. I don't care about a bed side manner. However, if they like many of the docs i'm running into doesn't know what rsd does to the body it will be a waste for both of us as an ire is abt. 2500. out of my pocket. I didn't even know there was this starting place to look for Doctors though. I can't really thank you enough and i will pass it on to the group.