Re: Re: ~Bev & DJ ~clinical trials and ketamine

[Guest guest]

.. Here in

the 'normal' medical community, they get paid whether it works or not so

they get hurried so they can make more money. At least some of the docs

do, not all, but more now than before it seems.

Hi DJ and Bev,

I wanted to tell you a story. When my lumbar sympathetic blocks failed, the pain clinic doctor that treated me this certain month (not my usual doc) said all he could offer me was the spinal cord stimulator. I said to him with all the percentages of failure, adhesions, and many numerous other side affects of the s.c.s., why do you even offer it? He said it is all he has to offer. I asked him "If your wife was in my condition would you put a scs in her?" He answered "NO" so, what does that say? I mean I know quite a few patients have had excellent results from them, but for the most part, I have only heard horror stories, like how hard these people need to beg to have them removed even.

As for WHAT IS NEW well, as I said before ketamine is the big 'buzz' word in the rsd community. I personally use the ketamine compounding gel. It is a gel that comes In a syringe type of applicator and you squeeze a dap on your writs and rub together until it is absorbed. It goes directly into your bloodstream that way. I find it is a great breakthrough medication, when I am having what I call an episode, I rub it on and it allows me to breathe, if you know what I mean. I also have the ketamine spray for the body, you spray it on the affected area and it numbs it for a time. THEN I have the ketamine nasal spray~new to me~ and I find this to work better than percocet for breakthrough, I am allowed to use it up to 4 times a day, one squirt in each nostril per application.

The biggest talk is about ketamine IV's. They have been doing them in Germany, and have just been approved here in the US. I am waiting to see how they go before I personally have it done. I discussed it with my pain doc, he is the head of the Brigham and Woman's pain clinic here in Boston. He said he would look into it, insurance wise also. The cost is roughly 15,000.00 per patient. What they do is induce coma and then give you a five day IV of ketamin. I met a woman at the symposium who had just returned (six weeks prior) form Germany. She brought her 16 year old daughter there who has rsd. for the ketamine iv. The girl was still pain free and pain medication free except for a follow up medication for the ketamine.

There is hope and light at the end of this RSD tunnel guys. It may be a few more years, it may not be the ketamine that does it, but I seriously believe it is coming. So we just need to hang in there.

With each others support we will make it.

Take care.

Hugs and a pain free minute,

Deb

Deborah Genatossio (Debgena@...)

National Planning Director ASRSD-CRPS

Founder of RSD-CRPS of America

providing support for years for all rsd friends

*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, and all are different colors....but

they all exist very nicely in the same box.

*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

RSD-CRPSofAmerica

The material presented here does not reflect the views of professionals. Please remember we are not professionals. Members may discuss uses and dosages for therapeutic products that have not been approved by their own doctor. A qualified health care professional should be consulted before using any therapeutic product discussed on this list. All members should verify all information and data with their own healthcare professional before employing any therapies discussed in this group.

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[Guest guest]

Deb,

I used Ketamine nasal spray years ago. Now, I found that I didn't like it at

all. I felt that all it did for me was screw up my head for 5 minutes, and

if it took the pain away for that five minutes it was only because my head

was spinning. I can't say I have ever used the gel or body spray though,

that I may be able to handle. But I didn't feel any pain relief from the

nasal spray at all. But everyone is different, and has different reactions

to different meds, right?!

Love,

>From: debgena@...

>Reply-To: RSD-CRPSofAmerica

>To: RSD-CRPSofAmerica

>Subject: Re: Re: ~Bev & DJ ~clinical trials and

>ketamine

>Date: Sun, 6 Oct 2002 17:23:58 EDT

>

>In a message dated 10/5/2002 8:44:41 AM Eastern Daylight Time,

>djhslim@... writes:

>

>

> > . Here in

> > the 'normal' medical community, they get paid whether it works or not so

> > they get hurried so they can make more money. At least some of the docs

> > do, not all, but more now than before it seems.

> >

> > Hi DJ and Bev,

>I wanted to tell you a story. When my lumbar sympathetic blocks failed, the

>pain clinic doctor that treated me this certain month (not my usual doc)

>said

>all he could offer me was the spinal cord stimulator. I said to him with

>all

>the percentages of failure, adhesions, and many numerous other side affects

>of the s.c.s., why do you even offer it? He said it is all he has to offer.

>I

>asked him " If your wife was in my condition would you put a scs in her? " He

>answered " NO " so, what does that say? I mean I know quite a few patients

>have

>had excellent results from them, but for the most part, I have only heard

>horror stories, like how hard these people need to beg to have them removed

>even.

>As for WHAT IS NEW well, as I said before ketamine is the big 'buzz' word

>in

>the rsd community. I personally use the ketamine compounding gel. It is a

>gel

>that comes In a syringe type of applicator and you squeeze a dap on your

>writs and rub together until it is absorbed. It goes directly into your

>bloodstream that way. I find it is a great breakthrough medication, when I

>am

>having what I call an episode, I rub it on and it allows me to breathe, if

>you know what I mean. I also have the ketamine spray for the body, you

>spray

>it on the affected area and it numbs it for a time. THEN I have the

>ketamine

>nasal spray~new to me~ and I find this to work better than percocet for

>breakthrough, I am allowed to use it up to 4 times a day, one squirt in

>each

>nostril per application.

>The biggest talk is about ketamine IV's. They have been doing them in

>Germany, and have just been approved here in the US. I am waiting to see

>how

>they go before I personally have it done. I discussed it with my pain doc,

>he

>is the head of the Brigham and Woman's pain clinic here in Boston. He said

>he

>would look into it, insurance wise also. The cost is roughly 15,000.00 per

>patient. What they do is induce coma and then give you a five day IV of

>ketamin. I met a woman at the symposium who had just returned (six weeks

>prior) form Germany. She brought her 16 year old daughter there who has

>rsd.

>for the ketamine iv. The girl was still pain free and pain medication free

>except for a follow up medication for the ketamine.

>There is hope and light at the end of this RSD tunnel guys. It may be a few

>more years, it may not be the ketamine that does it, but I seriously

>believe

>it is coming. So we just need to hang in there.

> With each others support we will make it.

>Take care.

>

>

>Hugs and a pain free minute,

> Deb

>Deborah Genatossio (Debgena@...)

>National Planning Director ASRSD-CRPS

>Founder of RSD-CRPS of America

>providing support for years for all rsd friends

>*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

>We could learn a lot from crayons: some are sharp, some are pretty, some

>are

>dull, some have weird names, and all are different colors....but

>they all exist very nicely in the same box.

> *:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

><A

>HREF= " http://groups.yahoo.com/group/RSD-CRPSofAmerica/ " >RSD-CRPSofAmerica</A>

> The material presented here does not reflect the views of professionals.

>Please remember we are not professionals. Members may discuss uses and

>dosages for therapeutic products that have not been approved by their own

>doctor. A qualified health care professional should be consulted before

>using any therapeutic product discussed on this list. All members should

>verify all information and data with their own healthcare professional

>before

>employing any therapies discussed in this group.

>(outgoing mail protected by Norton AniVirus)

>

>

>

>

>

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[Guest guest]

Bev,

Its the pharmaceutical co. that really sets the price and then the pharmacy.

The ketamine used to be available only at pharmacy's that did compounding,

but I don't know if that's the way it is anymore or not.I was using it way

back in 1993.

Love,

>

>Reply-To: RSD-CRPSofAmerica

>To: RSD-CRPSofAmerica

>Subject: Re: Re: ~Bev & DJ ~clinical trials and

>ketamine

>Date: Tue, 8 Oct 2002 13:36:09 -0400

>

>TONIA OR ANYONE DO YOU KNOW IF THE COST OF THIS KETAMINE VARIES FR STATE

>TO STATE OR IS IT THE DOC WHO SETS THE AMT. THANKS BEV

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[Guest guest]

Bev,

It is most definetly prescription, and very expensive.

Love,

>

>Reply-To: RSD-CRPSofAmerica

>To: RSD-CRPSofAmerica

>Subject: Re: Re: ~Bev & DJ ~clinical trials and

>ketamine

>Date: Tue, 8 Oct 2002 13:34:07 -0400

>

>HEY GUYS, IS THE KETAMINE COMPOUND OVER THE COUNTER OR PRESC? BEV

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[Guest guest]

SINCE I ALREADY HAVE THE BANANA BOAT SPRAY GEL & WORKS FOR A WHILE I'LL

STICK WITH THAT BECAUSE ITS CHEAP. THANKS FOR ALL THE INFO. GOD BLESS

BEV