[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!

[cuffs558]

[QUOTE=ali12;523897]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.


A little misunderstanding - I do have a great family doc that is treating me. The issue here is workman's comp and the state sending me to doctors that know nothing about the disease. I have had troubles with a few in the past but nothing like some in my rsd group as i have been able to pick for the most part on who i went to. However, now because a yaho who can ruin my financial life that doesnt' know what he is talking about -- now i have to find a doctor higher then he to give the opinion that he should have in the first place.......... but i do thank you for making me feel like i'm not alone out here on a bad day! Thanks

amy

[cuffs558]

Originally Posted by 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

Daniella, I live in scranton, Pa.. The Doctor i was set up with was set up by the state as an independant exam from the city and my doctor. Let me back track this being a work related injury and i worked for the city. However, the so called independant doctor wasn't just in the same bldg. as the city's doctor, he was in the same office. Then it goes down hill from there. So, I have to pay out of pocket for the next IRE as my atty. won't cover the cost which is abt. 2500.00. I believe the knuckle head doc was a DO so it won't be hard to top his training (but he may be an md... not sure) it still shouldn't be too hard to top it. I just have to find a doctor that knows what this does to the body and can give one. So any names i get, i have to check to see if they can give that type of an eval.. Funny you should mention a teaching hospital though. I just learned of a Dr. Robert Knoble from Thomas Jefferson Hosp. in Philly. Currently i am trying to check him out. I was thinking of going to cleveland clinic but with that i have to see if pa would take an evaluation from out of state. Its not a question of payment as i have to pay. Thank you again.

[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

[cuffs558]

[QUOTE=AintSoBad;524016]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

Again, thank you pete for being interested. I'm still new with computer sites and the navigation process, how much to give and when and where to give it ect....... I live in scranton, pa - as far as being here i try when i can walk or get around to the computer to do anything on it- so i guess i'll be saying i'm sorry a lot. It's a workmans comp issue. The so called doctor gave me an ire (Impairment Rating Evaluation), so i have to find a doctor that is higher then him. (an Md they indicate a Do but i believe his cards were md)
I heard of a doctor tonight of Dr. Robert L. Knobler. Have you heard of him or anyone talking abt. him. Besides finding a doctor that can give the ire, since i'm paying for it out of pocket - i'd like to try and find out first that he knows what he's talking about. I have not had a lot of the dealings as many of the rsd group members in my area and i'd like to leave it with the ones i've had. I know i'm looking around for a lot but i don't know where else to turn and i guess the ground isn't one for now.
Thank you for lending me your ear. Have a great day!
Amy