[Swatgen27]

llo everyone! I really hate to repeat a prior post but I was hoping to get information about the ketamine infusion treatments. After having numerous nerve blocks, and the failed RF injection I decided to change doctors. I went to Rush University Teaching Hospital in Chicago and after they agreed that I have RSD they offered me a couple treatment options. I decided to go the non-invasive route and try the ketamine infusions and I'm supposed to start on the 12th. I don’t have a lot of time for research and I can’t seem to find any information about the treatment from the patients point of view and I'm really nervous about it..... I just don’t want to get sucked into another treatment that is going to fail but I hear this one has a high success rate? I have researched it and there is not a lot information available. So please share with me anything that you think might be helpful.

[hannah1234]

I have had series of ketamine treatments. There is no 100% promise that it will work, but it took my pain to a level where I got off 4 medications and turned my stim off!!!!!!!!!!!!!!! I will do ketamine infusions until they stop working on me. I didnt have any weird dreams, pretty much no side effects from it. Except for a few days I felt a bit nauseus, but that is expected and he just gave me some medicine for it. I took my ipod in with me and listened to enya. For me I am 20, and the side effects from being on so many medications and STILL feeling horrible EVERYDAY, i had no reason not to go try ketamine, i mean what can we lose?? only pain which is what we are trying to get rid of. I still have some rough days of aching but the burning 90% completely gone. I dont know how i lived before I had the ketamine infusions... If you would like to talk more pm me and ill give you my number

Originally Posted by Swatgen27

llo everyone! I really hate to repeat a prior post but I was hoping to get information about the ketamine infusion treatments. After having numerous nerve blocks, and the failed RF injection I decided to change doctors. I went to Rush University Teaching Hospital in Chicago and after they agreed that I have RSD they offered me a couple treatment options. I decided to go the non-invasive route and try the ketamine infusions and I'm supposed to start on the 12th. I don’t have a lot of time for research and I can’t seem to find any information about the treatment from the patients point of view and I'm really nervous about it..... I just don’t want to get sucked into another treatment that is going to fail but I hear this one has a high success rate? I have researched it and there is not a lot information available. So please share with me anything that you think might be helpful.

[fmichael]

Hi.

These two articles, both courtesy the RSDSA http://www.rsds.org/index2.html may be useful.

The first article is written for the patient's perspective, "Overview of Ketamine Infusion Therapy," by Philip Getson, DO at http://www.rsds.org/3/treatment/ketamine.html

And the second, while more technical, is from one of the leading RSD practitioners in the U.S., Robert J. Schwartman, M.D., and the first to show in a double-blind controlled trial that at least the Drexel protocol for "low dose" ketamine appeared to be of substantial benefit in a small controlled trial, surprisingly suggesting that the benefit extended even to a patient population that included a lot of people who had had the disease for a year or more. "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR et al, Pain 2009 Dec 15;147(1-3):107-15. Epub 2009 Sep 23, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...n_Pain2009.pdf

Hope these help.

Mike

[Lynns409]

Hi there-

Just wanted to chime in that I haven't had ketamine of any sort. It wasn't used that much ten years ago, and at that time I went with a SCS. But I can totally totally understand going with a less invasive treatment before messing with the fun of a lot of surgeries. I would have tried it first for sure. Poke around on pubmed and review different treatments and studies... that always makes me feel more secure about whatever decision I'm about to make.

Lynn

[daniella]

Have you had any type of treatment so far for this? I agree and my current pain doc after many always feels it is important to start with less invasive. I am also thinking of doing this in Tampa. I am not sure of the success because there is limited amount of people who have done it. For me my concern is getting worse since the block and lidocane infusion increased my pain. I am assuming you have tried oral meds and blocks? I wish I had answers for you. We are all different in how we respond. I think if I go for an evaluation I am going to ask if it does not work or makes me worse what would be done or the next step. Good luck in your choice

[SandyRI]

Dear Swatgen,

The best of luck to you - I am on Dr. Getson's waiting list for ketamine - was hoping to get into his clinic this February but it looks like it will be March or even April. It has the highest success rate for relieving the pain of RSD out of all treatments right now, per a recently released study just published by a team of docs in the Netherlands that is available on the homepage of the RSDSA.org. There are a number of other articles available there also, the two best ones are linked above by FMichael.

From my perspective, there doesn't seem to be any reason not to try it as long as you are with a good team of practictioners that have an established track record. GO for it!! And keep us posted.

BTW - is your insurance company covering it? just curious...

Keep us posted on how things turn out for you.

XOXOX Sandy

[daniella]

Originally Posted by SandyRI

Dear Swatgen,

The best of luck to you - I am on Dr. Getson's waiting list for ketamine - was hoping to get into his clinic this February but it looks like it will be March or even April. It has the highest success rate for relieving the pain of RSD out of all treatments right now, per a recently released study just published by a team of docs in the Netherlands that is available on the homepage of the RSDSA.org. There are a number of other articles available there also, the two best ones are linked above by FMichael.

From my perspective, there doesn't seem to be any reason not to try it as long as you are with a good team of practictioners that have an established track record. GO for it!! And keep us posted.

BTW - is your insurance company covering it? just curious...

Keep us posted on how things turn out for you

XOXOX Sandy

Hi. If I do it at Dr K in Tampa it is not covered and it is 7500 for 3 days with I think follow ups. I think you can try to submit it to insurance but mine is so crappy I doubht it will be covered. I just don't get how they can come up with the research on success rate with RSD and this cause there is such a limited amount of people who do it due to the cost.

[SandyRI]

Getson costs $1250 - $1500 per day, depending on the meds that you need in your IV, he does not accept any insurance except WC. So far my WC insurance company (the Hartford) would rather pay lawyers to create roadblocks for me in RI WC court than focus on possibly getting me better (while paying substantial amounts for me on a monthly basis for my meds, temp disability, and the bills I run up when go to see my PM docs).

I put together a spreadsheet comparing the amount that it would cost for ketamine infusions vs. what is being expended now. If the ketamine works (which Getson believes it will, because I have had positive responses to other meds that work on the NMDA receptors), and I can get back to work, part time for 2 months and then full time for the rest of the year, over $35,000 would be saved in expenses in 2010 alone!!! And that's a conservative number - I assumed that I might need monthly boosters of ketamine, some monthly medication expenses, and even that I would be a part time worker for a few months (with the Hartford picking up the balance of my pay) before resuming full time status.

The daily cost of a ketamine infusion with Dr. Getson in NJ is less than what the Hartford currently remits to my PM in Boston for a stellate ganglion block or a lidocaine infusion, both of which are done in the hospital.

I cannot fathom why the insurance companies don't do the math. If ketamine infusions have the highest rates of success out of all the available treatments for RSD, and we can get off all the expensive meds and stop trying other procedures that are equally costly but NOT as effective, why are they denying the expense?

I have been in touch with United Health, and I am still waiting to hear what their reimbursement $$ is going to be. We will need to pay Getson first, and then submit our bills to United for reimb. That's not a great situation, but I need to get better and go back to work, and WC clearly doesn't care if that ever happens so I need to make it happen myself.

I am just so sorry that I waited until my court hearing (a week and a half ago) to decide to pay privately for the ketamine, I could have gotten on Getson's list sooner. I really thought I had a chance of getting a favorable ruling. But the judge didn't rule in my favor, instead she asked for reams of info on Getson (he's from out state and is only a "DO"), requested a review by a RI doctor of my files, and scheduled another hearing in a month. Who knows what will happen then?

Good luck to you, Sandy

Originally Posted by daniella

Hi. If I do it at Dr K in Tampa it is not covered and it is 7500 for 3 days with I think follow ups. I think you can try to submit it to insurance but mine is so crappy I doubht it will be covered. I just don't get how they can come up with the research on success rate with RSD and this cause there is such a limited amount of people who do it due to the cost.

[keep smilin]

Originally Posted by SandyRI

Getson costs $1250 - $1500 per day, depending on the meds that you need in your IV, he does not accept any insurance except WC. So far my WC insurance company (the Hartford) would rather pay lawyers to create roadblocks for me in RI WC court than focus on possibly getting me better (while paying substantial amounts for me on a monthly basis for my meds, temp disability, and the bills I run up when go to see my PM docs).

I put together a spreadsheet comparing the amount that it would cost for ketamine infusions vs. what is being expended now. If the ketamine works (which Getson believes it will, because I have had positive responses to other meds that work on the NMDA receptors), and I can get back to work, part time for 2 months and then full time for the rest of the year, over $35,000 would be saved in expenses in 2010 alone!!! And that's a conservative number - I assumed that I might need monthly boosters of ketamine, some monthly medication expenses, and even that I would be a part time worker for a few months (with the Hartford picking up the balance of my pay) before resuming full time status.

The daily cost of a ketamine infusion with Dr. Getson in NJ is less than what the Hartford currently remits to my PM in Boston for a stellate ganglion block or a lidocaine infusion, both of which are done in the hospital.

I cannot fathom why the insurance companies don't do the math. If ketamine infusions have the highest rates of success out of all the available treatments for RSD, and we can get off all the expensive meds and stop trying other procedures that are equally costly but NOT as effective, why are they denying the expense?

I have been in touch with United Health, and I am still waiting to hear what their reimbursement $$ is going to be. We will need to pay Getson first, and then submit our bills to United for reimb. That's not a great situation, but I need to get better and go back to work, and WC clearly doesn't care if that ever happens so I need to make it happen myself.

I am just so sorry that I waited until my court hearing (a week and a half ago) to decide to pay privately for the ketamine, I could have gotten on Getson's list sooner. I really thought I had a chance of getting a favorable ruling. But the judge didn't rule in my favor, instead she asked for reams of info on Getson (he's from out state and is only a "DO"), requested a review by a RI doctor of my files, and scheduled another hearing in a month. Who knows what will happen then?

Good luck to you, Sandy

I just have to ask this question.. pardon me if I sound crazy but... with the costs of the Ketamine infusions... does anyone else think...humm.... not sure I will go thru with it?? Mostly cuz we could virtually go broke for a POSSIBLE temporary fix... it's not a cure....see I warned you this sounded nutty.. it's like putting a price tag on our ability to function with RSD but man...these costs and insurance companies lack a sense of humor when it comes to helping a sick person along! KS

[hannah1234]

yes, but wouldnt you like to be pain-less or way less pain for a few months?? Seems wayyy worth it to me. You can get back to your normal life. I am 20 and do ketamine infusions, and I couldnt imagine a life without them!!!