[SCourcier]

Is there anyone out here who has good information on the actual results that are being obtained by going to Germany or Mexico and being placed in a medical Ketamine coma by Dr. Schwartzman?

I recently read a newspaper article about a young woman who had the treatment and her experience didn't sound all that great, but more alarming was that they were only citing a 40% remission rate at one year!?!?

Unless someone knows of any other possibilities it looks like I either need to go ahead and have the stimulator implanted (trial went OK) or roll the dice with the coma.

After five years on the pills I just cannot see any light at the end of this tunnel.

Any advice appreciated.

[SBOWLING]

Originally Posted by SCourcier

Is there anyone out here who has good information on the actual results that are being obtained by going to Germany or Mexico and being placed in a medical Ketamine coma by Dr. Schwartzman?

I recently read a newspaper article about a young woman who had the treatment and her experience didn't sound all that great, but more alarming was that they were only citing a 40% remission rate at one year!?!?

Unless someone knows of any other possibilities it looks like I either need to go ahead and have the stimulator implanted (trial went OK) or roll the dice with the coma.

After five years on the pills I just cannot see any light at the end of this tunnel.

Any advice appreciated.

Hello and Welcome to Neuro Talk!!

I have been to see Dr. S many times. The 4 hour 10 day ketamine didn't work for me. Have you tried that treatment yet? For now I have passed on the coma. My PM, physcologist and family doctor don't think it's worth the risk. Dr. S told me there is a 50/50 chance it will work and he couldn't say how long remission would last or how often I would have to have boosters. Everyone responds to treatments differently. It also depends how advanced your RSD/CRPS is?

Did you talk to Dr. S about the stimulator? He didn't think mine was a good idea and would have told me not to do it had I asked him. I had mine for 3 years and just had it removed last November. My RSD is full body and IMO the stimulator isn't designed for full body. The programmers where never able to get it programmed to really help. It is very sensative to posture and would turn up the stimulation and shock me when I turned my head. When I sat down it would turn off the stimulation. Even with my stimulator I was still on medication.

There is no cure for RSD/CRPS it can be managed. What hasn't worked for me may work for you. It takes time and open communication with your doctors to develope what works for you. I know how you feel about wanting a light at the end of the tunnel. Your light may be learning to accept the changes RSD has caused in your life. I wanted to get back to only my daily vitamin. However, I accepted I need my medications to maintain a quality of life. It's like a diabetics needs their meds, so do those of us who have RSD/CRPS.

I hope you are doing some type of exercise. I water walk and take a arthritis plus class at the Y two sometimes 3 days a week. You are weightless in the water so the pain isn't as bad.

I know at times it all seems so overwhelming and complicated. The nice thing is this site is full of people with helpful information. I hope you find relief soon!!
Sherrie

[CRPSbe]

The risks of the coma technique are high, very high, I know that much.

As to statistics of its succes, I have no idea. Maybe you could look around sites such as RSDHope.org and RSDS.org, who have lots of information on both the low dose technique that is done in the States and the high dose or coma technique that is done only in Germany.

[SCourcier]

Originally Posted by SBOWLING

Hello and Welcome to Neuro Talk!!

I have been to see Dr. S many times. The 4 hour 10 day ketamine didn't work for me. Have you tried that treatment yet? For now I have passed on the coma. My PM, physcologist and family doctor don't think it's worth the risk. Dr. S told me there is a 50/50 chance it will work and he couldn't say how long remission would last or how often I would have to have boosters. Everyone responds to treatments differently. It also depends how advanced your RSD/CRPS is?

Did you talk to Dr. S about the stimulator? He didn't think mine was a good idea and would have told me not to do it had I asked him. I had mine for 3 years and just had it removed last November. My RSD is full body and IMO the stimulator isn't designed for full body. The programmers where never able to get it programmed to really help. It is very sensative to posture and would turn up the stimulation and shock me when I turned my head. When I sat down it would turn off the stimulation. Even with my stimulator I was still on medication.

There is no cure for RSD/CRPS it can be managed. What hasn't worked for me may work for you. It takes time and open communication with your doctors to develope what works for you. I know how you feel about wanting a light at the end of the tunnel. Your light may be learning to accept the changes RSD has caused in your life. I wanted to get back to only my daily vitamin. However, I accepted I need my medications to maintain a quality of life. It's like a diabetics needs their meds, so do those of us who have RSD/CRPS.

I hope you are doing some type of exercise. I water walk and take a arthritis plus class at the Y two sometimes 3 days a week. You are weightless in the water so the pain isn't as bad.

I know at times it all seems so overwhelming and complicated. The nice thing is this site is full of people with helpful information. I hope you find relief soon!!
Sherrie

Thanks for the quick response and oh so honest feedback/advice.

I would enjoy providing you/everyone with more specifics about my situation, but it sounds like I could be missing a big piece of info that I need hep with first.

You and others seem to be indicating organ involvement as part of your CRPS?!?!?!? Can you educate me about this and can others tell me if any of this sounds familiar/makes sense?

For me all of this began over 5 years ago when I realized I had a constant pain behind one knee which about three weeks later was bilateral and so painful that I could barely walk.

That pain has only gotten worse, but it took nearly 5 years, multiple major clinics/hospitals in the US, more docs and tests then I can remember to finally obtain a diagnosis of CRPS as being the source of this problem.

What was discovered within 5 weeks of the onset of pain was that I had Triglycerides >3,000, I had hypertension (BP ~160/120), and I had a fatty liver.

The diagnosis of hypertriglycedemia was immediate. The treatment approaches were absolute and all of the doctors initially involved (and 90%+ since) were very certain that this was a genetic problem I was born with.

I however just didn't see how this was possible and given the potential medical concerns all of my immediate and much of my extended family were tested and not one had this problem, there is no history of premature deaths from heart attacks or strokes and to date no treatment has been able to bring them under 500.

This of course is only one of the other medical problems I have in addition to CRPS and in hindsight I have some serious questions about a number of strange episodic health issues I had throughout the years, but for now I appreciate any input other CRPS victims can provide on known impact to organs/systems and sources of info on this.

Thanks again

[CRPSbe]

Didn't you want info on the coma treatments? Or is it about organ involvement? I'm confused.

Maybe it wouldn't hurt to do some research first on the net?
Have you visited RSDhope.org and RSDS.org yet?

[SBOWLING]

The thread started out to be about the coma. As is the case many times it has lead to another question. Checking out RSDS.org and RSDhope.org are excellent sources of information.

As I understand my doctors. All the organs in the body have sympathetic nerves that help them function. For me the communication is messed between my heart and lungs. I have had test to rule out any structure damage to these organs. My heart rate is too fast I take Atenenol to keep it under control. I get short of breath when resting or moving around. The lungs think they aren't getting enough oxegen. I have learned to recognized the feeling and I concentrate on my quality of breathing. I also take Ativan to help with anxiety.

Feel free to ask what every questions you want answered. We all have different experiences and first hand knowledge. Along with the websites mentioned and communication with your doctors you'll get the answers that will satisfy your concerns. You may want to start a new thread for each question or topic. It just simplifies things.
Take care,
Sherrie

[msdrea83]

i have had very good results with in ketamine infusions from Dr Leverone in LA. He has a very good success rate with remission rates. he cannot guarentee remission but whether remission or not good results and a high decrease in pain in achieved. and once/if the pain comes back you can schedule another one whenever you need. I highly recommend him to anyone.

[wildberry2277]

Well here is what i can say... I slipped in to a coma do to no longer taking my pain medications and other medicationd under the advice of my sugeron he threatened me with out doing my other sugerys if i didint come off my meds... i was in a 3 and half week coma and when i came out of it the pain was much better... but 3 months later i am back in the same boat and in the same amount of pain so no its not the Ketamine coma but it was a coma no the less and that was my result... i dont have any advice reffering to the Ketamine coma .... Maybe that will help or add a little more insight...

Pain free hugs and good day to all...

[SCourcier]

Originally Posted by msdrea83

i have had very good results with in ketamine infusions from Dr Leverone in LA. He has a very good success rate with remission rates. he cannot guarentee remission but whether remission or not good results and a high decrease in pain in achieved. and once/if the pain comes back you can schedule another one whenever you need. I highly recommend him to anyone.

Could you expand on your experiences with this approach?

Are you actually saying you get to go days without pain?

In my case the pain is in my legs. It hurts to stand, it hurts more to walk and though I am only 42 short walks is all I can handle on my best days.

If we take the kids to the fair, Disney World, Sea World, etc... I am in a wheelchair. Are you saying I might be able to stand, walk even jog without pain?

Just one day like that with my son would be worth a pretty penny to me let alone the possibility of intimacy without pain!!!

From the info I have read these low dose infusions typically leave the patient out of it for a period of time after the infusion. Is this correct? Are we talking a day or two or more?

Once your head clears you get pain free living for awhile? A couple of days, a week, more?

[daniella]

I have looked into the op ketamine with another doctor who worked with Dr S. I have heard people getting a range of help with this from no relief to good just like many treatments. I too have this in my legs/calf/feet. In addition to this I have a lot of other health conditions going on that is not the norm for someone 30. Anyhow I too was going to ask you other then the meds what other treatments have you tried? I know when I called Dr S office he was booking into Oct 2010. I also think the coma treatment is the last possible they want to do. The op ketamine of course could be an option I would think but wondered if you did blocks,catheter,looked into the scs etc?