Looking for a doctor
 

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........
:)

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

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. :winky:

Mike

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

Hi Cuffs,

Welcome to Neurotalk! It is so good to meet you though sorry it has to be through RSD!:hug: 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!:hug:

Mike..need help with the site that is posted
 

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

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

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

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

Mike

I can't even thank you enough for responding:
 

---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???

Thank you
 

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.

Thank you for taking your time for me
 

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.

Thank you for taking your time for me
 

[QUOTE=ali12;523897]Hi Cuffs,

Welcome to Neurotalk! It is so good to meet you though sorry it has to be through RSD!:hug: 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

I'm sorry, didn't mean to offend -- Thank you for caring & sharing
 

[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

Hi again. I am sorry about your struggles with care. I am not familiar with WC etc but I looked up Dr Knober and he is on the RSDSA website and they have a patient story and she was under his care. I think it may be a good start. Like I said I have traveled out of state aka Cleveland Clinic. I have a friend who was treated there who had better care then I had. I did not feel they worked with me and gave options. They just wanted 1 procedure and were open to nothing else. The local doctor I found really listens and works with me. I am not saying not to go to CC cause everyone is different like my friend who has had good benefits from there. At CC they will work with you though if you have to pay out of pocket. I would call that Dr Knober esepcially since he is near and a neuro as well. There is often a long wait to get an apt and it is better sooner then later. Hang in there

Hi Amy, "Cuffs"
Amy, please don't worry about the 'exact' proper etiquitte for the forum. We all started once here, like yourselfl. You are doing just fine. I still don't know how to ask a question. We are just happy you found us, and we are more than happy if something we say helps you deal with this incredible disorder.
When my Dr. told me he would be moving in the future, I called the Mayo Clinic, and asked if they had a Dr. treating RSD. I also call Barrow's Neurological Institute and asked about their staff and RSD. So that may be one idea for you. Also, does the City of Scranton have a list of Drs. acceptable for the WC situation.
Another idea possibly is physical therapy groups. I was misdiagnosed here in Arizona and eventually flew back to my homestate, Oregon to a sports injury orthopedic group and saw the hand specialist. He diagnosed me in 1 minute followed up by testing. Ordered a tens unit and got me into physical the next day. I cam back to Arizona and saw a neurologist and orthopedic dr. ,hand specialist, and he had a physical therapy attached to his office. They physical therapists are actually ones that are very familiar with RSD-much more than the average DR. I was thinking, have you thought about calling physical therapy groups in your area and ask if they were treating RSD patients and then ask who are the leading Drs. in the area?
Because of the delay of treatment--wrong diagnosis'--My hand is crippled and can't bend fingers completely, kinda like a claw I guess. So it's really important to get physical therapy as soon as possible. If fact, if you end up with permanent lack of range of motion because of city's delay of treatment, you have recourse. Timing of treatment is really important.
Where do you have RSD? Has it spread? Do you have any range of motion issues?
Really wish to the best. Take care, and remember you are NOT intruding in any way by asking questions. Everyone here is more than happy to try and help you if we can.
Remember, it takes a tribe to raise a child. None of us would do very well without each other and our friends and family. And sometimes, they distance themselves because of difficulty in understanding RSD or their issues around illness. whatever.
Take care, and let us know iwhen you find a Dr. and how you like them. loretta

Sorry for the delay in responding, I just hadn't been following the thread. I would be greatly surprised if any of the doctors who went through the rigorous certification procedures of the American Board of Pain Management - including an 8 hour written exam - was unfamiliar with what RSD does to the body.

But as an aside, I'm constantly surprised - and not always prepared - for some of the little wonders, "good" and "bad" that life has in store. A very wise 102 year old Zen Roshi here in LA takes the position that he is a travel agent, selling tickets to Heaven and Hell, and the trick is to be indifferent between the two!

So good luck. I'm curious as to any feedback you get; keep us posted.

Mike

[QUOTE=cuffs558;524316]

Amy,
I'm SO ,SO , SO SO SORRY, that it took me this long to respond!
Dr Knobler, has been my main doctor since the early 90's!
He IS THAT GOOD!
I put my life in his hands!
(From Scranton, it's well worth the trip, it'll be about 2 maybe a little more, hours). Do It! You're SO CLOSE! He's a guy that has people FLYING in from other countries and states!

I can call@ any time of day, and get a call back from him withiin 5-10 minutes, (Not that I want to advertise that). He is wonderfully compassionate.
In fact, he has had RSD himself. (as did his wife).
They are both wonderful people, and KNOW what we're going through!
This is a once in a life time opportunity.
YOU WILL NOT EVER SAY, THAT I TOLD YOU THEY HAVE BOTH HAD RSD!
I WILL DENY!

THEY KNOW What pain is!


So, make an appointment, go see him.
He takes NO INSURANCE.
CASH OR CHECK.
Yet his C.V. (Curriculum Vitae) is thicker than anyone's besides maybe Schwartzman, (As he was Schwartzman's partner for many years, @ Jefferson), Now, he runs the K.I.N.D. Clinic.
Knobler Institute of Neurologic Disease.

(You get what you pay for!)
Pay him, and turn in the bill!

He's a great person, with a great family! His wife just called me today. To see how I was doing.

Here's his Phone #
215.643.9045

Again,
I'm so sorry it took me so long to get back to you.
My mind has been bent by this divorce.
Craziness.

When you call, use my name,

Pete Woj.
That's what they call me. (Or Wojy)

It's all good.

They're great people, and he WILL give you the time that's required, and take good care of you!

I wish he had more time, he is the best doctor I have EVER seen!

PM me, if you, (Or anyone) has any questions!
:hug::hug::hug:
Pete
Asb...