Hello all!!! I know its been so long since I've been around, but I've been so busy with school and work... I had my 3rd ketamine infusion right before the new year, and once again I am back in remission. The last one lasted for 5 wonderful months!

I have an assignment for my communications class to speak of a controversial issue. And so I have decided to speak about the coma treatments and whether or not patients with debilitating pain conditions,specifically rsd, should be allowed to risk their life in order to get relief once we have run out of options.

I was hoping that if you have personal experience with the coma treatment, the doctors, or any articles/sites that you may pass them on to me so I may include the information/testimonies in my speech. I have a few, but I know that personal stories would be great to include. both good and bad encounters, as I have to present both sides.

Thank you soooo much for any help!!!

I'm determined to bring awareness to as many students at my school as possible, haha it seems any assignment I have where I have to inform or persuade an audience ends up being about RSD!

Dear Andrea -

While this isn't MY personal experience - and not yet entirely hers - please focus on keep smilin's very recent thread I am home... Dr.S is AMAZING!!!!!!!! http://neurotalk.psychcentral.com/thread116803.html in which she notes, in her opening post:

We have to fight for the insurance company to come on board in order to proceed which he recommends a 5 day inpatient coma ..sadly, I will have to remain at Drexel in the ICU unit for some time... [Emphasis added.]

And someone else (my apologies, I've forgotten whom) had previously mentioned that the German program - which to my knowledge wasn't treating Germans in any event - had closed down.

This is a HUGE development! It means that Drexel's IRB - for which I have information suggesting that it was always the stumbling block, notwithstanding public statements that the door was being blocked by the FDA - has finally come on board, and is permitting the work to go on in Philadelphia. This may even open the door, for some patients at least, to obtaining insurance coverage for the procedure, which could in turn have a cascade effect, encouraging other hospitals to come on board.

Good times.

Mike

Hi Mike,

I'm fairly certain that Drexel is still only doing the 5 day "inpatient" ketamine treatments. They are done in the ICU. But the doses of ketamine are not as high as the doses that were used in Germany. A fellow Rhode Islander is scheduled to start the treatments with Dr. S. in just a few weeks.

Sandy

that's awesome they can be done soon in the states!!! i kinda stopped looking into them when i was denied for going to mexico, and now that i've found a doc in la that does the 4 hours infusions on me... i need to get back with what's current!

Hi everyone..kS here..I can help clearify..Yes, they are infusing with the 5day inpatient Ketamine in Philly..Dr. S ... the "moderate" dose of Ketamine..The 10 day outpatient infusion is there also but the "high" dose is done outside of the United States..still considered experimental..Our next stumbling block is whether the insurance companies will join on for covering such interventions..I appreciate Mike noting my recent visit to see Dr. S, a week ago today I saw him..

Have a sweet day all...


Kathy

thanks for clearing that up some

Absolutely Andrea...

Weez family!!!

Let me know if there is anything more I can do...

Have a good night,
Kathy

P.S Also along with the 5day inpatient moderate infusion ... the 10 day out patient low dose infusion is done at Drexel also...

do you know what the dosage difference is between low, moderate, and high is? As far as I can tell, the low you're awake and functional, and high is the coma... i'm assuming the ones I get are moderate, its 4 hours and i'm knocked out....

The high dose you are knocked out for 5 days, coma..the moderate you are knocked out for 5 days,coma and the low you recieve an infusion while listening to your ipod..the low takes 4 hrs. a day Mon-Fri for 10 days. as an out patient...I am not sure of the doseages received for each .. I can try to find out the levels if you wish... I know they are a gradual incline during the duration of the infusion for each...

Hugz, Kathy

Hello Andrea,

Have you seen this synopsis of ketamine coma research ?

http://www.rsdfoundation.org/en/Medical_Synopsis.htm