Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-17-2007, 06:46 AM #1
InHisHands InHisHands is offline
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Help Ketamine Infusions/ Insurance Questions on that

Sorry to start a new thread here, but I felt I should as far as Ketamine questions go and not fundraising...


COSTS on TREATMENTS
~Do you know the approximate costs of the Ketamine treatment?

~Was any of it covered by your insurance?

~Does anyone know of any insurance company that can be persuaded to pay for any of it?



Then, on to Ketamine TREATMENTS:

~Has anyone had this EXACT treatment from the same Dr. Harbut?

~If you have had an infusion, then how long did the relief of that work, and at what percentage rate did it relieve your pain?

~Did you go in total remission with it?



If anyone can point me to more research/ stories on the Ketamine Infusions, I would be so grateful! Thanks a bunch!

Last edited by InHisHands; 09-17-2007 at 03:24 PM. Reason: spelling... I hate typos! :P
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Old 09-17-2007, 06:47 AM #2
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ALSO, any Ketamine experiences at all would be great. Thanks!
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Old 09-17-2007, 08:00 AM #3
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Default Ketamine costs

HI Vanessa, my insurance did help. As the treatment is not available here, they applied out of network rates to my infusions. Not to the coma - it went towards my deductible only and that is still in debate since it was out of the country. We have been through every penny we have , had or would have. Our retirement funds you name it its gone. And Ive been one of the lucky ones with insurance. I have had it all - two 5 day icu ket infusions. , 2.5 years of two day infusions, roughly 2000 per visit, not including air and hotel, the coma in germany 60,000, we borrowed. now mine was more expensive than most as I became very ill and was in icu for 30 days. cost of coma treatment is 25,000, around there. The 60,000 includes hotels etc for my husband , airfare etc. My insurance has been very helpful applying out of network rates to hospitallization for ketamine infusions everywhere but Germany.Im one of the lucky ones when it comes to insurance. Was it worth it all. Absolutely- when I went for the coma I was literally just on the edge of going mad from the level 9-10 pain 24/7. I am not exaggerating. My pain level is down about 50%. I will probably go for booster infusions the rest of my life but im here, Im coping, my life will never be as it was. I wish ketamine worked for everyone . Im lucky it has helped me . Let me know if I answered your questions I kind of got on a roll sorry about that. sincerely cz
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Old 09-17-2007, 08:41 AM #4
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ALSO, any Ketamine experiences at all would be great. Thanks!


Hi Vanessa,

I am sorry I can only talk about the use of Ketamine in Australia but I can say that Dr Harbut studied with Graeme Correll many years ago in Queensland Australia, so I wonder if that means he would be using the technique used here.

Would love to share Ketamine experiences---what would you like to know specifically?
Love Tayla
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Old 09-17-2007, 09:45 AM #5
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Hi CZ I just want to ask you a quick question. (I just read with so much interest of your story about the ketamine infusion, I was on the edge of my seat!) Wow!!! thanks for sharing! I would like to know what made you so ill that you were in ICU for 30 whole days?? wow!! Now, that had to be expensive... especially in the ICU unit! thanks. As for you, Ness, I hope and pray that all works out well for you! Love to you both!! ~Love, Desi
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Old 09-17-2007, 03:24 PM #6
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Quote:
Originally Posted by tayla4me View Post
Hi Vanessa,

I am sorry I can only talk about the use of Ketamine in Australia but I can say that Dr Harbut studied with Graeme Correll many years ago in Queensland Australia, so I wonder if that means he would be using the technique used here.

Would love to share Ketamine experiences---what would you like to know specifically?
Love Tayla
I was curious as to how long the treatment helped you, how much relief you got and did anyone happen to have 100% relief with it?

Thanks so much!
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Old 09-17-2007, 06:54 PM #7
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I was curious as to how long the treatment helped you, how much relief you got and did anyone happen to have 100% relief with it?

Thanks so much!



Hi again Vanessa,

It has varied with me from infusion to infusion. Sometimes I think that it has depended on how poor a condition I was in before I went to have it.
There have been times when I have felt fantastic for a couple of months after with seriously reduced pain levels, there have been times when there was only relief for the time the infusion was running.
I can't explain how nice it is to have some continuous sleep and to feel almost relaxed for once.
I know that there are several people here in Australia who have gone back to a fairly normal existance following the infusions with a cessation of all RSD symptoms,I know others who have had several months and others who say it did NOTHING
I definitely think the fact that it really is a relatively safe drug when used under supervision and that side effects are entirely manageable makes it well worth taking the chance on it if it is available to you.
Love Tayla
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Old 09-17-2007, 06:55 PM #8
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Default SO many questions, so little energy or "spoons"...

I have so many questions, right now I just found out from an RSD buddy from another group that she is getting Ketamine infusions from Dr. Getson. SO, apparently he still IS doing that in some way! I will be talking with her later on, but as for now...

I am trying to figure this out: there are Ketamine infusions by Dr. G. and Dr. S. where they follow up with boosters. Dr. Harbut, on the other hand does 1 continual 5 day Ketamine infusion. Which is better and has more success?

Thanks!
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Old 09-18-2007, 03:07 AM #9
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Originally Posted by InHisHands View Post
I have so many questions, right now I just found out from an RSD buddy from another group that she is getting Ketamine infusions from Dr. Getson. SO, apparently he still IS doing that in some way! I will be talking with her later on, but as for now...

I am trying to figure this out: there are Ketamine infusions by Dr. G. and Dr. S. where they follow up with boosters. Dr. Harbut, on the other hand does 1 continual 5 day Ketamine infusion. Which is better and has more success?

Thanks!




Hi Vanessa,

I can't comment on the outpatient then booster Ketamaine as we don't do that here but I have heard on this site from someone (sorry have forgotten who) who did get relief from outpatient and booster.

My opinion on this is that the inpatient treatment allows a slow and steady titration of the dose until you reach a level that best suits you.
Once this level is reached then it can stay there maintaining that level of relief for the entire time of the infusion ?5 days there in USA.

A side benefit from the inpatient treatment is that you can actually make the most of feeling 'ketamined" and get some good quality sleep and relaxation---something you'd be unable to do if you have to get up, go home, cook tea and get the kids ready for bed.

Of course, this is JUST my take on it as someone who has only had the inpatient type.
Love Tayla
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Old 09-18-2007, 05:44 AM #10
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I have been on ketamine every day 3 - 4 times a day for the last 2 years or so. It has made a big difference to my quality of life and I really feel it is a pretty safe drug to use. I have had some issues from it and the withdrawel is truly terrible but it has helped the total continuous pain and has in many ways helped me get my life back. Before I went on to ketamine I was on huge doses of morphine, methadone and many other very strong opioids and could do nothing at all mentally. Although I have worsened alot physically from the RSD since starting ketamine I think that without the ketamine I would have lost my brain as well.

I don't know if that makes me a success or not. But it has helped give me what I think of as a pretty ok quality of life back. I can go out, spend time with friends, attend class, work, travel etc. I am still in a wheelchair and totally unable to move, but I enjoy parts of my life, which is something I didn't and couldn't imagine doing before starting it. I still have bad days and I still find the RSD very difficult, especially as it worsens generally but I think, looking back, that I would be in a far far far worse position if I hadn't had the ketamine.

But thats my 2 cents.

Love

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