? Dr Schwartzman & Dr Kirpatrick
 

I was looking through posts of people who have seen him. Anyhow I am wondering does Dr S for treatment only suggest ketamine? I am not against trying this though am not sure. I just feel some docs have there thing they do like some always suggest scs,nerve block,catheter and don't look a the patient individually. I know the wait is long for him and Dr Kirpatrick does it in Tampa ketamine but his wait is like a week so that is concerning too. I am so confused on who to see now as I am in a bad place pain wise and it seems to be spreading more. This is a real downer since I was making slow progress for a time but this flare up and spread has been months. I am drained from going so far to see doctors too. I would fly to Japan if it would help but when one goes so far to get little relief it takes a toll. I also seem to be getting more skeptical of docs and treatments as the time goes on. Can anyone give me some thoughts?Thank you

Hi Daniella,
 

Have you thought about seeing an Anesteologist. They now have offices sat up where they take care of Pain Management. I have one here that is great and I have seen them do good for a lot of people I know. You might try to find one in your area that has an office sat up.

I agree, that one track mind thing in these Drs. just don't cut it. One treatment is not the answer for everyone.

Some of these Drs. are winning their popularity on one treatment only to tell people they don't qualify. It goes back to kickbacks from those treatments.

I do hope you find some help soon to get rellief.

Ada

Hi. Yes I have seen a couple anestesolgists like Dr Stanton Hicks at CC. My actual best pain doc is the one I found at a hospital that is a teaching hospital in my homestate. He was willing to listen and also did not have a 1 size fit all approach. I had 2 procedures with him and my pain increased and why he wanted to wait to do the scs. I may go back to him cause he was not out to make money and did not go along with all the other docs I have seen he looked with a fresh eye. I am not out for meds cause I am on no narcotics or do I want to be but I have had little relief from the pain docs I have seen so I keep researching new. Yet with my research I go to who are supposed to be good in rsd treatment and I am let down so that is why I am skeptical now. Thanks for your thoughts.You made me think that maybe I should go back to the pain doc I was working with.

HI Daniella, I have seen and been treated by both Dr.'s. Ican tell you that they both have certain ideas of how to treat an RSD patient. Dr. Kirkpatrick definely had his own way of doing blocks {because he did them himself] and with the kind of medicine he would use,period. He was definately not one of my favorites. He seemed to just treat the problem that he thought you were having,even if at that point you needed help with another area. As to Dr. Schwartzman he is the kindest most caring Dr. I have seen except the Dr. I have here in Florida, But Dr. S. is also pretty set in his ways too. I believe that his big thing is sending people with severe RSD to Germany for the Ketamin coma. That whole coma thing scares me. Well I know how draining it is to find the right doc, heck it's draining to have RSD let alone finding the right treatment for yourself. You just have to keep on trying to find who and whats the best for you. Your friend Wendy

danella
Could you share your experience with Dr. Stanton-Hicks? Send me a PM if you don't want to post public.

I have seen another doc at CC a couple times. I have not seen S-Hicks because he treated my sister when she had RSD, and she didn't care for him.

I am trying to nail down if there is anything else, reasonable, that I can do. I have had this crud so long now.

I was seeing a doc at OSU, but he got a promotion and no longer sees patients.

I can barely make it to Cleveland - about a 3 hour drive - so I don't want to go out of Ohio.

Dear Daniella... and everyone here..

Your concerns are loud and clear and very valid!! I aggree with Wendy, although I have not seen Dr. K but I have seen Dr. S. just a few weeks ago matter of fact..He is the most knowledgeable, kind, super Dr. I have yet to encounter..I am still in awwe.. having treated with him..even tho my news was unfavorable.. meeting him overshadowed my bad news..Yes, these Dr.'s all have their speciality ways of handling patients RSD..but I also feel if the treatment recommended is not feasible $$$$ then we haven't much choice following the plan, my case anyway.. and I feel thye realize that also..but I still benefited as having Dr. S diagnosis and confirm my RSD and it's progression, it is worth every penny to know where I stand currently and his professional opnion on what I can expect for my future...lets face it we haven't many choices to go by anyway..sad but true... but we do have ecahother!!

Hugz, Kathy:grouphug:

First thank you all again. I really appreciate it. I do feel that many of the RSD docs have there "thing" they do and don't always base it on the patient. Though we all have the horrible pain of rsd we all respond so different to treatment and why I don't like the one size fits all.
Keepsmilin I am glad you benefited seeing him. Are you going to do the ketamine? Sorry I am a little confused.
Wswells right there with you about the coma. There is no way for me but everyone is different. What part of FL are you in? I am in Southern FL.
Daylilfan I can't say I was happy with my treatment there. I felt they also have a certain thing they do as the starting point is a tunneled epidural catheter and then you do PT everyday. Everyone I have read who has went to CC for rsd has been suggested this. If this does not work then you go onto more invasive like scs possible. I do know someone who sees Dr Stanton Hicks who had a scs done and she is doing much better but she did the cathter etc before. I too drove 4 hours to see him each way so I understand that and he spent like 10 min with me. You can email me or anyone else too if you want more info.
Thanks again.

Hey D...

Following my diagnosis with Dr. S..whole body plus interanl..i didn't expect the internal part..I would lean more to the 5 day sleep there..but my insurance is not on board so I won't have a decision to make..I am fighting it with little hope they will approve it...

Kathy

Do you mean the coma in Germany or Mexico? I stated this on another post but there are blogs of a few people who did it. The parent does a day to day posting. I am sorry about insurance. I did not think the infusion even is covered cause I know at Dr K I would have to pay out of pocket.Wouldn't they do the infusion first before the coma to see how you respond or no? You are in my thoughts and thanks again.

Thxs D~

The 5 day sleep is not the same as the "coma"..The 5 day is an inpatient sleep..@ Drexel at a moderate does of Ketamine..The coma is 5 days High dose done outside of the US..Germany or Mexico.. Now there is a low dose out patient infusion that ne is awake for..that is 10 days of infusion..4 hrs. for 10 days..I paid out of pocket to see Dr. S inticially also..They explained to me that private ins..has NEVER approved the Ketamine intervention..so I am feeling backed into a corner more than ever now as my RSD ..Dr. S said is whole body and internal..and my ins. won't jump on so .. it is a wash.. but I won't stop appealing it..I absoultely hate the thought of being asleep for the 5days ..it may not become reality anyway so I am not going to fret..and I refuse to put my finances in a downward spin for some pain relief which may last a short time or not at all...Maybe me sounding crazy but kids are going to college soon..

Hugz, Kathy

I am a patient of Dr S and Dr Knobler, his former partner. Dr S had me in for a ten day stretch of high dose lidocaine infusion. No cure.

I now see Doctor Knobler, and am not sure why his name doesn't come up more often.
IMHO, he is as smart as Dr S, just more conservative. He's got rsd, too. He knows the ropes. (He deals with an anesthesiologist, I think, I don't pry). He is also a Ph.D psychology I believe, he can learn a LOT just by speaking to you! He can tell you things that you didn't know about yourself, and he's very strong with insurance companies.
His C.V. is very thick. Your attorney will love him.

I've been with him about 20 years, and he doesn't mind who else I see, but he is my main doctor, over and above Dr S. Dr S. you see, will farm you out to his circle of doctors who will prescribe, etc.

Doctor Knobler will do the same, but he prescribes, and will take a steady even handed approach, I have great respect for both of these men.

Doctor Knobler moved his office out of Jefferson, although he is still affiliated, and opened his own clinic, called KIND (Knobler Institute of Neurologic Disorders) He specializes in RSD and MS.
In Fort Washington, a mile or so off the PA Turnpike, outside of Philly.
He takes no insurance, but you can send the receipt to yours.

Having this disease since '83, I would recommend him to anyone else who has it.
(Of course, I've seen many people drive all day, or fly in from other countries to see him).

Pete

Thanks Pete..I just wish they could duplicate these top notch RSD phsycians so we could all have easier access to them and the bonus would be our insurance companies would be on board so we could proceed with treatment instead of getting held back by the almighty dollar..so not right!!!

Thanks again, Pete..

Kathy

can someone give me the phone numbers to the drs in florida.. I know there is a waiting list. but i am out of options.. I need to see a dr who cares enough to want to try to help even if my chances are slim.. I thought i would see how long.. maybe send my records and see what they suggest. maybe finally get some long deserved help.. pm it to me if you dont mind.. i mean dr. S or kirpatrick or however you spelled it. sorry.

thanks.

Thank you Daniella.

The doc I see at CC says the only thing left for me is the month long inpatient PT, or an SCS.

I cannot afford either of them.

Jules

Hi Pete,

Thanks for the info. I wish that I had lots of money and was able to travel comfortably.

What amazes me is even the reputedly kindest of docs only accept "cash" in payment and insist upon the patient filing for reimbursement themselves.

If Knobler is so strong with insurance companies, why doesn't he accept most insurance plans and file himself? And he's not the only one, a lot of the really good RSD docs are the same way.

Sandy

Amen, Sandy!!

Hugz, Kathy

What part of the country do you live in?
 

Hi Daniella.

I do have some experience with Dr. Schwartzman and some very good pain doctors who do ketamine in NYC. So if you tell me your location i.e. east coast, west coast, etc I might me able to help you.

Gabbycakes

Hi,
 

My question would be what kind of Drs. these were before they got on the one track trail. Was anyone seeing them before one got on Ketamine, one got on SCS, one got on Pain Pumps, etc. What made them get on the one track?

Insurance Companies won't give them the whole amount they bill such as SS doesn't so I would think it's a way of getting what they want for a visit.

Sandy those kind hearted Drs. want Money.

If I see a Dr. that diagnoses me and says, but I can't do anything for you, I move on and believe me I don't think he's great. I would rather he say, well you have this and we could try this or that and I'll do what I can to help you.
I don't give them credit where it's not warrented.

My PCP took care of me for 5 years free so I put him in the catagory of being a caring Dr. but a lot of the Drs. nowadays are strictly out for the money.

I saw a PM Dr. here that charged me 275. for 1 visit about 5 years ago only to tell me he couldn't help me. How many patients does he run through there like cattle and then don't have to mess with them anymore? He did tell me I needed to be in a month long rehab program. He owned that program. I decided to ask the recepenist how much it was on my way out and she told me 10,000.

Maybe too, the insurance companies have them figured out also.

Ada

Hi Barbara,

My daughter is under the care of Dr. Kirkpatrick in Tampa, Florida. We love him, he is very caring and funny!:o

Here is his number 813-995-5511
His address is 1910 E. Busch Blvd. Tampa, Florida 33612

The facility is called The RSD/CRPS Treatment Center & Research Institute.

I hope this helps. If you need anything else, you can pm me.

Sandy

Once again..we RSD'ers come out on the bottom..again..again and again..huh?

I am sorry for all of your pain also.. somehow we are bettter people for it all..someone shoot me now for talking so silly!!

Hugz, kathy:grouphug:

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

Awwww, it was just a bb gun, I just wanted to get your attention. I am so grateful that Dr. S, was able to put you at peace with your (instincts). Your health and overall wellbeing is priceless, you cannot put a tag on that and WE haven't. The doctors and insurance companies have. This illness drains of many more things than money. However, when you come across doctors, and we all have who recognise our desperation for pain relief, they will and do take advantage of you. Now, if this was a sure hit or even a high possibilty for a cure for you, I would tell you to go full throttle but in actuality, you are a guinea pig to their advantage, it is a win win for the doctors, and a possible lose lose for you. If they cured people with this, they would be all over the news broadcasting their good deed that they have found a cure, and if this cured everyone of us thereafter, your money would be well spent. It is hard to beleive that the insurance companies are declining something like this, especially if we are looking at a lifetime of remission, not a cure just remission would be nice. You are a wonderful friend, and friends don't let friends paddle drunk...so I will take over for the day!!! LOL

Jeanie

Have either of you had a chance to meet other RSDers in person that have been successfully treated with ketamine? I have.....and that is why I have tried so hard to get it. I know people who feel their lives have been literally saved by the infusions.

We have a support group in my area that meets once a month. The leader of the RI RSD Foundation started receiving ketamine in Boston at Beth Israel on April 16, 2009. (The BI's program has since been closed to new patients.) Her story is very compelling.

I won't ever give up trying to get better. I HATE being sick. My injury is a WC injury. I want to go back to work ASAP. I've tried everything else.

XOXOX Sandy

Fantastic, how did you know I was having one of those days?? A drink or two would be nice... my friend.. Pardon my hiccups...

Hugz, kathy

Hello Sandy..

How are you ?? Unfortunately, I do not have access to a local support group, other than my friends here. Not one in my area, I checked and I have not met anyone personally who has under gone the Ketamine treatments..but I am keeping an open mind as maybe one day, as we are all being backed into a corner... possibly there will be more Dr.'s who perform this intervention, less travel.. and it becomes the treatment of choice, not pushed aside like the SCS and blocks... and if only the insurance companys would be on board and not deny us.. as far as medicare, I checked into that and once we become a SS recepient, you have to be on it for 2 years before coverage, unless I am all wet on that.....I, like many would be all over it if we could achieve pain relief.. so far I am now on my third appeal with my HMO and I am losing gas as my next appeal is a teleconference with an insurance committee and I can not formally present documentation that the Ketamine is not considered experimental...so they got me again..Plus, I have a NYS dept. of Ins. rep. working on my case but they can't help due to the same reasoning...plus my congressman, who has a disabled daughter..he is a good listener but the juice of choice is our stumbling block!!

Is Jeanie still paddling this boat?? Who turn is next????

Hugz, Kathy
:grouphug::grouphug::grouphug::grouphug:

Don't mean to jump in here out of turn - but ketamine has become an "accepted" treatment for RSD. That's what Getson's office tells me, anyway. I understand that Dr. S. is really strong with insurance companies. Has he or his office done any work on your behalf? Has there been any impact on your case because of the 2 double blind studies that were done last year by him and in The Netherlands?

How cool that you in the pharma industry. That means that you really understand this stuff better than the average joe...

Interestingly enough, the women to whom I referred to in my previous posting, who has been getting ketamine infusions for a year now in Boston at the Beth Israel, was approved for the treatments by United Healthcare. She is only liable for her deductible. Because she got her life back I am really happy for her - she is really nice and she and husband deserve it (heck - we ALL do!!!). But I often wonder how it could be that it was so easy for her while I'm being tortured for approval over the same treatments by the same health care company....ugghhhh...

Take care Kathy, xoxoxo Sandy

Snady..
I love visiting with ya..Yes, I have been knee deep in the pharmaceutical trenches for 25 yrs...and loved it... got the lingo and medical background..sadly my RSD pulled me away from it.. I did crawl with my RSD there for 3 years but could not do it anymore...

Dr. S's office said they can only say it is used "off label" as far as they are concerned and the ins. company can't get past that... as their interuptation is saying then it as experimental then... I have been working with Dr. S's in getting documentation together for my conf. with United health Care based, MVP ins. actually..and Dr. S's told me they have never known any private ins. to approve 5 the day sleep, thats where I lost my gas in my tank... still yet to be refilled!!

I am tickled for anyone who can go forward..I hope and pray that others will benefit for life!! And I am equally sorry that you, my dear are being tortured also... hang in there..You are a fighter ..we'll see this thru!!!

Hugz, K:grouphug:

Hi KS, and yes I am still paddling...up the river. Okay, so now to my understanding, they are curing people or remission with this treatment?? And you have the same insurance as this lady that Sandy knows, then why can't you use her as an example to get your approval. Or for that matter, why can't Dr. S, show significant documentation of the pts that he has used this treatment on and prove at least remission? This is what upsets me, the fact that the doctor is not backing you on this because he has no evidence and yet he wants your money! KS...if you really want this treatment and you believe it will work for you it probably will. You have to find someone or some type of evidence that this is not experimental and indeed has given people back thier life. Your Dr. should be able to provide this type of documentation, of course following the HIPPA laws, that this is working for people. I say, fight...search the internet for remission or cure with the use of this treatment, call the Dr. office and ask if they can help provide you with documentation, there has to be some help for you here. Don't give up, I know you want this treatment and you deserve to have it!!!! I will pray for you and believe that you are going to be approved for this treatment. In the meantime, just sit back and enjoy the ride...I got it.

God Bless all

Jeanie

Yes, Jeanie.. my dear friend, you summed up my fustration exactly..I did call Dr.'s office and they promised they would send me documents showing it's effectiveness but when I asked for the documentation to specifically say it is used as non-experimental..thats where the back peddling started saying they use it as off label drug but it is classified as experimental as far as the insurance company understands... further saying they have never heard of a private ins. approving this treatment.. that is where I somewhat felt doomed.. my fight was over!! But how do they approve the treatment for others?? I believe United Health Care is the carrier of my ins, MVP...we may be able to prove it's effectiveness but not it's classification for usage...I won't stop appealing, however..I am stubborn little thing...

Oh my... Jeanie..you have been up front paddling for a very long time..as I sit back enjoying the ride..soon we must switch, as I believe I will be causing you reason to drink and take a turn to relax.. after this post....I gotz yur back!!

I so appreciate your prayers, my friend..


Luv, Kathy

I think everyone of you has made a valid point.. I really wont pay for my appointments.. but wc owes me that. I feel that i am never going to be desperate enough to try the scs. I know the risks are too high, i dont want faster spread. I dont want down for the time for the leads to stay placed, i dont want any of that.. On the other hand i will get desperate enough for pain relief.. But my problem isnt the pain per se,, its the burning that gets to me.. The pain i tolerate, the burning drives me insane..However i havent had anything for pain either, so i have had to tolerate it without any aids.I agree that most drs just are out for the money,, and we need a cure. And i believe someday we will get that cure.. But until that happens we still have to deal with those drs to get the meds we need or the treatments we need to stay mobile. I dont think we can really point fingers at just the 2 drs whose names are on this thread, because i can give you several more that are much worse.. Atleast they are trying to help, whether it is just to push the ketamine or the scs..I realize that it is probably just for the money, but we need help, we cant do this without drs. everyone knows this... ok.. I am done rambling. sorry..

forget my post.. i didnt go all the way through i guess.. ks i really hope and pray you can get your ins to go through and you get the treatments you deserve..