Ketamine Treatments?
 

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.

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 :)

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

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

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

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.

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:eek:

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!!!

Yea.. but I am way old...(I am 47).. and I can't remember being 20.....{grin} I am only kidding, Hannah... they are way worth it... I am scheduled for my consult in March in PA.:winky:

Guess I just hate that we can have our teeth cleaned and have 100% payment but something as devestating as RSD.. and we can not be re-assured coverage..that steams me... Obviously our insurance carriers are not suffering from RSD huh???

KS

Amazing isn't it? But they will pay for everything else - some of which doesn't work, or only works part way - the blocks, the lidocaine infusions, all the meds!! With the ketamine, if it is successful, you don't need all that stuff anymore, or at least not as much of it. So why are they still denying it? And why are so few practictioners FDA approved for administration of the ketamine for RSD?

We can only hope and pray that changes are on the way soon. XOXOX Sandy

Dear Daniella -

Sorry, just saw this. Keep in mind that there is some body of evidence that ketamine infusions, in general, work better the sooner they are given in the couse of the disease. Kiefer RT, Rohr P, Ploppa A, et al, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isomeric S(+)-Ketamine in Refractory CRPS Patients, Pain Med. 2008 Feb 5, Vol. 9, No. 1, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf

The importance of the time of administration of ketamine and its effect on pain is suggested by the success of memantine and ketamine in reducing phantom pain if given perioperatively but its failure to modify established pain [30–32]. The effectiveness of ketamine in early vs established long-standing CRPS pain has not been studied by randomized controlled trials.

Notes
30 Kiefer RT, Wiech K, Topfner S, Unertl K, Birbaumer N. Continuous brachial plexus analgesia and NMDA-receptor blockade in early phantom
limb pain: A report of two cases. Pain Med 2002;3:156–60.
31 Kiefer RT, Wiech K, Dieterich HJ, Birbaumer N, Unertl K. The NMDA-receptor
antagonist memantine for prevention and therapy of phantom limb pain. Anesthesiology 2003;A:1009.
32 Dertwinkel R, Heinrichs C, Senne I, et al. Prevention of severe phantom limb pain by perioperative administration of ketamine—Results of a pilot
study. Acute Pain 2002;4:12–6.

But see, Schwartzman RJ, Alexander GM, Grothusen JR et al, Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, 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 (suggesting that with the right protocol, outpatient infusions of ketamine may be useful in chronic cases afterall).

Mike

I figure the insurance will not cover it and I love how someone put that we are going broke just to have the possiblity of living like we did. Now that I think about it, it's almost like a dog chasing its tail....
I have BCBS and they didnt cover the RF injection and the reason they said was because it was experimental. My insurance plan is a PPO high deductible and per the contract everything after I pay my deductible is covered 100%. I still have to call about the ketamine but I'm sure they will say that the treatment is experimental just so they dont have to cover it. =(
Now that I think about it, I think in total out of pocket expenses that I have paid since the RSD started is $25,000 and that is with insurance. I guess they would rather have us stay on our medicines and not treat then damn disease those stupid money grubbing a**holes.
The ketmine treatment is the last treatment that I will be pursuing. If this doesnt work than I will have to just continue managing the RSD with medicine. My only concern about the medicine management is that I have been on opiates for 3 years and they dont work as good as they use too so where will I be in another three years in relation to my medicine dosage? I will call my insurance co this week and let you guys know if they cover it but I have a feelin that they wont. My first treatment is the 12th, so I hope it goes well... I hope it is worth the money..and most importantly I hope it works.

Ketamine helps opiates work again normally in your body - that is, it reduces your body's tolerance levels to their original levels so that you are back at "baseline." So instead of needing 5 Percocet a day to be painfree, for instance, you will comfortable again with a normal dosage of just 2.

Empire Blue Cross of NY covers ketamine. So does Medicare if you have Part B. I know that United Health now covers it, although their coverage may be a lot less than what the practictioner charges. I am waiting to find that out how much of a difference there is going to be. I have a max deductible on my United plan that will kick in.

If you are told no then you should appeal. And keep appealing. I think it is worth a shot. There are now 2 double blind studies confirming the efficacy of ketamine for the relief of RSD pain (see RSDSA. org). The 2nd one was done by a team in the Netherlands.

Things are changing. Put together a comparable expense schedule like I did. It is amazing how much money is currently being spent by my WC insurance company on meds and disability pay. What a waste!! I believe it is the Netherland's study that concluded that ketamine appeared to be so effective (80%) that it should become the treatment of choice for most cases of RSD in the future.

Good luck to you , and don't gve up! Keep us posted please....XOXOX Sandy

Hi, I am going thru the same. I have found that Tampa ketamine is higher dose than Phila dose but shorter time. That ketamine is not a cure. That it has been around since 1930's and that they can't get it to last in the body. That everyone reacts and holds it different lengths of time in their system-some get 2weeks relief and others may get a few months. It is risky. It's expensive. I was told that you are kept on the meds you are on so there are no variables in the equation that change the outcome-this i dont like because i want to be off or cut back from my meds if i do something like ketamine. I would like to know the long term effects of ketamine at high dose on the body. I read not many short term side effects. Now i think you cant go by % anymore because RSD is rare and we were all the ones that got it. Just maybe we could be the ones that prove ketamine works. momof4

Momof4... and all.. Good morning..So this leaves me scratching as I am not taking meds fr my RSD... nut ain't I?? But my belly won't let me..so if I go for the Ketamine then it's me and the Ketamine alone..no back up meds and I can possibly hope for weeks or possibly months worth of relief?? Iam almost putting a price tag on my chance to walk again....this is al just insane!!:grouphug: KS

I do think of the cost. I keep thinking- maybe i'll give it one try to see if it miraculously works or even if it settles things down it would be worth it. But, I agree that it is a treatment, just like medicine which we (except Keep Smilin!!) are on. So no, I have no intention of having booster, or treatment again and again. Does anyone know the long term effects when it is used over and over again? I also think that i am not going to let CRPS rule me by having to have infusions every month especially if i cant get off my meds. momof4

I know a fellow RSDer in RI who gets "k" infusions about every 4-6 weeks in Boston (in a hospital that refuses to take new patients - that's why I will have to drive 270 miles to NJ for mine). She is off most of her meds except for when the effect of the treatment begins to wear off and she needs another booster.

Ketamine has given her her life back. For 4 years she was mostly bed bound, unable to walk, suffered from extreme noise sensitivity like me, vertigo, cold sensitivity and lots of other RSD symptoms. Now she is like new. All because of ketamine. Insurance is covering a lot of the cost of her treatments, but not all - she has to cover the cost of the annual deductible for her policy. Her new life isn't perfect, but it WAY better than it was.

Ketamine is just another treatment for us, but it's a very powerful one and for 80% of us it can help us perhaps get out of bed, get out of a wheel chair, or for me - I hope - return to the work force.

I am keeping my hopes up that this treatment is the one for me, and I think you all should, too.

XOXOX Sandy

Ketamine Update
 

I have had two ketamine treatments in the last 2 weeks and I have noticed alot of changes and for the better. I have already gotten off half my pain medicine. This is amazing because in the last 3.5 years we have had to increase the pain meds and never decrease them. The actual infusion has come with risks.. The first time I had issues with breathing / blood preasure and the 2nd treatment I had no breathing issues. The day of the infusion is the worse and really compared to nerve blocks, RF injections the actual infusion treatment is much easier. The only part that I'm not sure of is how long the relief will last. The 3rd appointment is set 14 days after the last, so I'm hoping that I will get a full two weeks of good relief. Also, I have noted that my legs feel warm again and the color looks a lot better (not purple / blue). Also, at Rush (Chicago) the infuse you with the ketamine and lidocaine so I think I'm getting the best of both worlds. There has been a huge change in my overall pain and that in itself makes the expense worth it. Main side effects: High blood preasure and weakness.
The only bad part is that this may cost me my job because I yet again have to take time off for treatments. I guess you cant win them all...
If any of you guys have a chance to do the ketamine treatment, I would highly reccomend it.

Thanks for keeping us updated. What is your doctor's protocol for the ketamine? For instance, how often are you scheduled to get infusions and how much does he give you at a time?

It is awesome that it works for you!! Congrats!

XOXO Sandy

You need to file for FMLA-Family Medical Leave Act. That will protect your job. You can get the paperwork from Human Resources, and have your doctor fill it out for you. Don't wait.

Sandy

looking for a referral in Chicago
 

Can you tell me who you are seeing? We are tring to find someone in Chicago area who works with Ketamine.

The ketamine treatments that I participated in was at Rush University teaching hospital in the pain management department. The doctor that you would want to be seen by is Dr Lubenow as he is the doctor that has to approve the infusions. The phone number to make an appointment is: 312-942-6631. I wish you luck and hope you find the relief that you are searching for.
Sarah

Tampa - ketamine
 

My daughter had her first ketamine infusion done in March. We went to Dr Kirkpatrick in Tampa. First thing is, Dr. Kirkpatrick is great and his staff. It is very expensive. Three days high does outpatient was 7500.00. But for my daughter it was money well spent. She had full body RSD pain level was a 8-10 everyday. Since the treatment the pain is down 50 to 60% and skin sensitivity is down apprx 70 to 80%. It has been two months and she is still doing good. She does water therapy exercise 3 times a week. Went back for our follow up and I was wanting to do another treatment right away, thinking it would help even more. However Dr. Kirpatrick did not recommend it. He said she is doing so well to give the exercise and stress management some time to work. He wants to wait as long as possible before putting her through that again much less the cost. Never had a doctor turn down money. Anyway, Dr Kirkpatrick is great. :wink: