i live in iowa but looks like i might need to travel. or maybe they can get with a dr i can see and help me get some treatment.. i need something.. so thanks for the info. appreciate it alot..

Hi again. Thank you again for your thoughts. I live in South Florida but am willing and able to fly anywhere for treatment. It is hard on my body for the right doc I will and have. Unfortunatly a lot of docs do see $ signs looking at us. I remember when I went to UCLA anestesolgist he spoke to me for 5 min and said the only thing to do was a scs and at that time I had not even had a block and sent me away with a dvd of the procedure. You know I don't expect the doc to be so friendly but I do expect a doc to take time and explain. To those who are unable to travel I really have to say out of all the docs I have seen who are supposed to be experts with RSD my best doc I found at a teaching hospital at a major hospital in my homestate. He was the director of anestesolgy but what I did was call the hospital up anestesolgy pain dept and explained my condition and they matched me with the doc who dealt a lot with RSD. He knew of the docs I had seen before hime but he still looked at me with a fresh approach and like an indivdual. I may go fly back to see him.
As for insurance companies I think many are not willing to pay for something that has little statistics of if it helps or not. There is such a small pool of peole for ex who have tried ketamine infusions so to me there is not enough data to know if it is successful and why insurance may not want to cover them. I am no expert but that was my thought. I have PN too and my doc said though that this condition seems to be covered for procedures in general more then RSD. So if others have another condition and your insurance won't cover something for rsd you may want to ask if it would for your other condition. Though ketamine is not for PN
Day I did the pain program at Cleveland but the day patient that is 8 hours a day but only lasted 4 days and then was sent to the anestesolgist there. I know that CC works with people who don't have the money to pay cause they are non profit. You may want to call and talk to them about that if you are interested.
Dream I think Dr S was/is a neurologist. I think Dr K is anestesolgist. I am not sure how they got into what the specialize in. I think some are very set on what they do and don't look outside the box. Like I said we all have the horrible pain of rsd but we all differ so much on how we respond.
Ok I am sorry for my novel I really thank you all.

Hi Daniella,
 

I'm doing fine these days except for the pelvici pain. I saw about 5 PM Drs., 3 Neurologist, and Orthopedic surgeon, who knew I had it but didn't want to tell me, I'm sure. What a jerk.

I have a good Anesteolgist and my PCP is the best person that has ever walked into my life next to my husband and kids. He just took over my medical care and pain management about 7 years ago and worked hard at getting me to where I am today.

IF some of these Drs. out there would read up on RSD and think outside of the box, they might be able to do more for people with it. I truely believe they think it is too time consuming for them to mess with.

I did meet one good PM Dr. at the U of CO. years ago and he left there not long after he started taking care of me. He actually moved to a whole different area of work at the hospital. I really liked him though. After that I only ran up on loser PM's. No interest in helping me.

I do believe these Drs. are looking for the treatment that brings them in the most money to push. I have a friend that went to Dr. S. I wouldn't waste my time on him. I've already been told what I have, I don't need any verification on that.

I do hope you find someone to help you soon. Keep looking because there are some good Drs. out there that do care.

Ada

Hi Sandy!
What I was referring to with Dr Knobler's strength with insurance companies is, his ability to stand up to them. Wether it's WC, or a lawsuit. His Curriculum Vitae is (His records of education and his life's accomplishments in the field) very tough to surpass, like Dr Schwartzman's.

"Those in opposition" wether an insurance company, or their counsel, are satisfied that they don't have a better option for you. So, your chances of being reimbursed, or winning a battle (If you deserve to) go up..

The reason why these doctors don't accept insurance is simple, I hate to say. They have risen to the top, they're the cream of the crop.
They don't have to!
Dr Knobler has four full time staff in his office, without dealing with insurance, THAT is some overhead! For one doctor, and since his heart attack, rather than retire, he often takes a day off.

I"m happy that there are doctors of this calibre, because when I got injured in '83, I had UNLIMITED insurance, auto, in PA. It still took me 7 years, and literally more than a hundred doctors, before my chiropractor, realized what I had. (This is why I think Opods are useless for rsd), Years of frustration, denial, non belief that cost me a marriage. Torture!
This Chiropractor, got on the phone to Dr S himself, and I was in within a few weeks!
So, the insurance $ didn't make a big difference to me. Even though hundreds of thousands of dollars were spent, it got me nowhere, I was in a "meat machine" of sorts...
Sorry I'm rambling...

Anyway, I wish everyone the best with their health. And, keep moving!
I've gotten sedentary recently, and I'm really feeling it. A trip to the grocers can take me down for a couple days, after all these years. Plus it adds to the depression!

Be well All!

Pete

Ada,

What is your specific beef with these docs? Is it that they seem to only push ketamine and you don't want to try it? Have you tried it and it didn't work for you? Or are you against it because of the side effects?

Does Dr. S. offer anything other than ketamine? Does anyone know? What happens if you go to him and the ketamine doesn't work? And you've paid $500 for initial consultation fee? Then what? Does he stick with you? What other treatments does he offer?

Thanks, Sandy

Hi Sandy,
 

My beef is that it seems to be the only thing offered such as the ones that push the SCS or Pain Pump before other things that are not so invasive are tried.
My friend went to Dr. S before Ketamine and got nothing from him but I have heard that from others on here.

I think we put these Drs. on pestitals and donot seem to see that they are out for the money and don't take the time to try and find other things to help people first. I have seen them around here and have friends that go to them and are worse off for the wear due to them pushing the SCS.

I feel in our desperation to get better we do jump on anything at times they offer not even thinking about what the outcome will be and the Drs. don't care.

It's not just the ketamine, it's the fact that they are only on a one track mind attitude.

These Drs. to me aren't looking at the human aspect of people, they just see the money.

Pete is right, they have gotten to be the cream of the crop by reputation of what people are saying about them and not about what they are doing to make a person better.

Pete, I do give your Dr. credit for sticking with you for this long. He cares.

Ada

Hi again
Dream thanks I am now leaning towards the anestesolgist I saw in MI who did my lidocaine infusion and blocks. He does not push and actually was honest about the scs saying he feared it may increase my pain since those 2 procedures did. I agree about that we all in such bad pain are desperate and basically the docs could charge anything and some people will pay.
Sandy obvioulsy I can't say this for sure because I have not see Dr K but I have a feeling if you go to him he will suggest ketamine infusion if you have rsd.If you can and are willing to try it as the patient he would do it. Now I could be wrong. The 500 is the start because the 3 day 4 hours is 7500.
Aintsobad I am glad you found a doc to work with. I also think that when the docs get paid directly they get more money sometimes. I can really relate to you about the sedentary. I am just getting out of that. It was a bad cycle cause my pain has been so bad that I have been laying os much which in turn adds pain. So I have been trying to do more too. Good luck with your errands.
Feel better all.

BANG!!!! I mean dang, sorry Kathy, you are not silly but we are definately on the bottom. I have to agree with Dreambeliever, due to the fact that our main symptom is pain, intense pain, makes us intensely desperate as well. Unfortunately, most of the doctors that have joined "the wagon" know this and are out to make a big quick buck at out expense. They are not looking for a cure, they are making too much money on the treatment, and now they are denying health insurance!!! They want cash up front for the initial consultation, then tell you this horrible news (scare tactic) and then send you off to ponder on your life savings. I don't think so, I seen three doctors in three months, they all agreed about the agressive stage of the disease and they each had the cure! So if one didn't work, I could just try the next and so on. One I seen I thought was real sincere, and about two weeks in he had a two week program that he felt I desperately needed. It was five days a week for two weeks and about 40thou!!! and by the way insurance may not pay for it. And then of course once you deny the treatment, you are dirt under their shoes. That is why I turned to natural remedies, medicine, meditation, I will take the pills any day over the abuse that they were going to put my body and mind through. And if all else fails....then somebody can shoot me too!!! God Bless You all,

Jeanie

Jeanie~

You shot me girl..thankgoodness you did the dirty work..You are a true friend and so funny.. I totally agree with everything you stated, Jeanie and Ada..As I find myself pondering over my next step ... I know my limits and have always said I will not place every penny I/we have saved to be poured into the "possibility" of a chance for me to have a defined time of pain "relief"... I understand clearly your point and yes..we are realing with relentless pain daily for our lives so we are very volunable..My recent visit with Dr. S, I say was a great benefit as I needed verification of my stage of RSD and what to expect for my future... as my PM Dr. here could not do that for me... I find that I am a detail girl..no sugar coating for this chick....give me the facts is exactly what Dr. S did...I work in research, well I did until Dec. 09... for 25 yrs. for a big momma pharmaceutical co... humm and Iam only 29 yrs. old (kidding) how does that happen?? ..So medicine and the world around medical stuff is my bag. I was happy to meet someone so knowledgeable and on his/our game... the next step will be my call but I can not justify going after that carrot if it is not approved by my insurance.. so they lost me as far as a player... in the game of..this is what you need so get the cash and come back...seems I put a price tag on my chance to walk again and ultimately watch myself be consumed by my RSD but to me.. I see no other way as $$$ is big for the Ketamine .. Maybe it was not going to prove to be a positive route for me to take anyway...in the mean time, I know where I stand and thats good enough for now. We all basically in the same boat..it just depends who wants to take over paddling eachday..

SO Jeanie..how many bullets did it take to drop the ole' lady??

Hugz, Kathy:grouphug:

Funny - I was just talking to my sister about this a few minutes ago -from what I have been able to research, Medicare pays for ketamine. United Healthcare pays for some patients to get it (not me yet, I am still appealing - they have only agreed to pay the doc). Empire Blue Cross in NY pays for it.

Keep appealing with your insurance company if you want to try it.

hopefully things will change for us in the next few years as more docs come on board with ketamine administration.

XOXOX Sandy