[General]

I ended up in the ER 3 weeks ago two nights in a row with pain so bad I seriously wanted them to amputate the foot and I would take my chances with phatom pains. Fortunately, a procedure we'd been researching for two years and begging to get into the trials of, was recommended to us in the ER. It's a Kedamine induced coma. I was placed in a coma for about two days while they introduced the Kedamine to my system as well as performing a rapid detoxification of my system. I never realized that pain medicines can eventually turn against you and cause you even more pain. I won't lie to you. There are side effects such as short term memory loss (I don't remember the entire week before I went into the hospital), some holes in long term memory, vision impairment and some dexterity issues. Most of these are short term and you'll get them back. The only thing hanging over me now is the loss of memory, which is certainly a rather odd feeling. The good news is however controversial this treatment may be, I am currently in remission with about 90% of my pain gone. I am walking for the first time in two years without a cane. I HIGHLY recommend looking into this procedure. It scared the hell out of me, but I am so happy to be without pain for as long as this will last. Take comfort in knowing that this disease is one of the most studied diseases at the moment and many new trials are be conducted all over the States. Doctor Ian Black brought the treatment to Vermont from Texas and I was the third person to ever have it done here. I hope some of this help you and you'll be in our prayers. God Bless.

General

[Jimking]

You had coma treatment in the U.S.? If so that's a good thing because not long ago it was prohibited by the federal government for this procedure to be performed in the States. Two days under may be the reason its changed or it could be the State telling the fed to bug off, perhaps.
Congratulations on the 90% reduction in pain, you must feel like you've been born again, I'm sure!

[keep smilin]

Originally Posted by Jimking

You had coma treatment in the U.S.? If so that's a good thing because not long ago it was prohibited by the federal government for this procedure to be performed in the States. Two days under may be the reason its changed or it could be the State telling the fed to bug off, perhaps.
Congratulations on the 90% reduction in pain, you must feel like you've been born again, I'm sure!

If we talking Ketamine..I, too am very happy you had great success and some relief...

Only due to my recommended treatment as per Dr. S..I am being asked to have the 5-day sleep..which they made clear this is not considered the coma.. however, it is the moderate Ketamine dose.. the big dose 'coma' is done outside of the U.S.. and the 10 day out patient infusion is another option (which our very sweet Sandy RI did have recently).. that is a different, lower dose also.. Funny, althought they put us in a nappy state they are cautious with that word 'coma'... Either way..the insurance companies are so against approval of these treatments due to FDA approval in the States.....once again..take me behind the shed.. I am still fighting to get approval but not hopeful.. I pray for the day they can bottle the Ketamnie up and send it to our appropriate local RSD Dr.'s office and allow us to get it from there...Probably won't happen in my life time but it is a great thought..Heck, if we had cancer..we'd be in the infusion room the day after our diagnosis...

Hugz, Kathy

[Jimking]

Originally Posted by keep smilin

If we talking Ketamine..I, too am very happy you had great success and some relief...

Only due to my recommended treatment as per Dr. S..I am being asked to have the 5-day sleep..which they made clear this is not considered the coma.. however, it is the moderate Ketamine dose.. the big dose 'coma' is done outside of the U.S.. and the 10 day out patient infusion is another option (which our very sweet Sandy RI did have recently).. that is a different, lower dose also.. Funny, althought they put us in a nappy state they are cautious with that word 'coma'... Either way..the insurance companies are so against approval of these treatments due to FDA approval in the States.....once again..take me behind the shed.. I am still fighting to get approval but not hopeful.. I pray for the day they can bottle the Ketamnie up and send it to our appropriate local RSD Dr.'s office and allow us to get it from there...Probably won't happen in my life time but it is a great thought..Heck, if we had cancer..we'd be in the infusion room the day after our diagnosis...

Hugz, Kathy

That makes sense KS. I will say before my wife had ketamine infusions at the hospital her pain doctor was giving her a big shot in the arm of ketamine in her office. She was a mess for a couple of hours.

[General]

Originally Posted by keep smilin

If we talking Ketamine..I, too am very happy you had great success and some relief...

Only due to my recommended treatment as per Dr. S..I am being asked to have the 5-day sleep..which they made clear this is not considered the coma.. however, it is the moderate Ketamine dose.. the big dose 'coma' is done outside of the U.S.. and the 10 day out patient infusion is another option (which our very sweet Sandy RI did have recently).. that is a different, lower dose also.. Funny, althought they put us in a nappy state they are cautious with that word 'coma'... Either way..the insurance companies are so against approval of these treatments due to FDA approval in the States.....once again..take me behind the shed.. I am still fighting to get approval but not hopeful.. I pray for the day they can bottle the Ketamnie up and send it to our appropriate local RSD Dr.'s office and allow us to get it from there...Probably won't happen in my life time but it is a great thought..Heck, if we had cancer..we'd be in the infusion room the day after our diagnosis...

Hugz, Kathy

We were shocked at how sudden it all happened. We'd been begging for two years to get in on the Ketamine trials but it was definitely an uphill battle. I have no memory of the week prior to the procedure, but my wife, to whom I am ever grateful, was clear with the MD who suggested the treatment in the ER, that there'd been email traffic flying for two years with our names all over it. We looked in every corner of the States and were blessed when everything fell together in July. (of course it did take two ER visits in a row of which I remember nothing) He gave us no time to even call our insurance stating he had other patients to see and had to have an answer immediately.

He was very clear with us that this was indeed an induced coma not sedation and once a breathing tube was inserted and I was down for the count, he suggested to my wife that she may as well go home for the duration and they would call with any updates or emergencies. They did take me out four hours early as I was apparently having some issues, but nonetheless I ended up fine. As I stated before they performed a rapid detox as well and all went well.

My main purpose for joining this forum was to spread the word. THE INDUCED COMA IS AVAILABLE IN THE STATES. It is NOT a 10-14 day coma as purformed overseas. I was under for under two days and am currently enjoying an almost 90-95% remission. Dr. B stated I could expect as much as 9 months relief. It could be less but I am not stamping my foot with an expiration date. When the pain returns I will not need to go through the coma again. An infusion is conducted as a pseudo booster and hopefully will extend the relief. God willing all of us will have seen a cure soon.

God Bless

General

[kathy d]

Dear General,
Wow, I am sooooo happy to hear of your pain relief. I was saddened when I first saw your posting since the same scenario happened to me five years ago. I was in severe pain and my body was shutting down from how severe the RSD had gotten both internally and externally and I was in the ER four times in one month and two of them I was admitted for (the first two times). However, I did not have Ketamine then because they kept refusing to give it to me and sent me home but the second time they sent me home I have no recollection of four days at all. I even let a nurse into my home and signed some papers from her with NO KNOWLEDGE of it!! Scary. It seems when they put me in the hospital they kept injecting any and all medication to get me pain relief. But they never took into consideration that all of it mixed together could have killed me. Thankfully, my son recognized (at 16) that something was wrong with me and had a friend take me to the ER for admission. They could have killed me so I know how you feel about the forgetting of it all. But count your blessings and rejoice that you are doing so well now. I am awaiting the Ketamine IV procedure here in Philly for over three years now and have been in court 3 times in the last year fighting workers comp to pay for it so I any day I should hear one way or the other and I will be running (in my wheelchair with my canes of course) to the hospital for it. I too was not aware of two day coma in the U.S. Wow, I am hopeful. Best of luck and keep us informed of your progress.
kathy d

[General]

Originally Posted by kathy d

Dear General,
Wow, I am sooooo happy to hear of your pain relief. I was saddened when I first saw your posting since the same scenario happened to me five years ago. I was in severe pain and my body was shutting down from how severe the RSD had gotten both internally and externally and I was in the ER four times in one month and two of them I was admitted for (the first two times). However, I did not have Ketamine then because they kept refusing to give it to me and sent me home but the second time they sent me home I have no recollection of four days at all. I even let a nurse into my home and signed some papers from her with NO KNOWLEDGE of it!! Scary. It seems when they put me in the hospital they kept injecting any and all medication to get me pain relief. But they never took into consideration that all of it mixed together could have killed me. Thankfully, my son recognized (at 16) that something was wrong with me and had a friend take me to the ER for admission. They could have killed me so I know how you feel about the forgetting of it all. But count your blessings and rejoice that you are doing so well now. I am awaiting the Ketamine IV procedure here in Philly for over three years now and have been in court 3 times in the last year fighting workers comp to pay for it so I any day I should hear one way or the other and I will be running (in my wheelchair with my canes of course) to the hospital for it. I too was not aware of two day coma in the U.S. Wow, I am hopeful. Best of luck and keep us informed of your progress.
kathy d

Do not despair Kathy, there's hope. Keep looking for the trials and keep on your insurance to pay for it. Many times trials are paid for by the hospital because you're taking the risk. But as with all things, you have to sign away all but your first born! It sounds like you've been where I have. I was certainly ready to let them take my foot and take my chances with phantom pains. NO ONE can understand the pain involved with RSD unless they have experienced it themselves. Pain Meds. They work.... to a degree. They really were not meant for nerve pain and that's what we feel. They do, however, seperate our head from our body for a short while breaking the pain cycle long enough for us to catch our breath and bear down for when it ramps up again. BUT they can actually turn on you in a number of ways. The worst NOT being addiction but the actual adding to the pain you have. If you've been to the ER four times in a month and experienced pain even after they came running at you with needles, I would submit to you that pain meds have unfortunately stopped working for you and you should formulate another plan of attack with your pain doctor. Discuss rapid detox with him and see how workers comp considers this. At the very least you've set your body back to zero and the meds will start working again for you. The other side of this coin is that you need a support network of friends family and even the folks here on the board to assist you in your battle. FIND A PSYCHOLOGIST OR PSYCHIATRIST that deals with patients of RSD and make an appt. I didn't even know these people existed until two weeks ago and have my first appt. tomorrow. They will help you with the anxiety I know you must feel with this disease. This is a different front from which you need to fight and you cannot take it on alone. They will help you make decisions like.... are you addicted to the pain meds (that can creep up on you) or are you dependent on them. It's a fine line isn't it? That's why they are there. My thoughts and prayers are with all of my RSD brethren as well as my brothers and sisters overseas in harms way. God Bless and Peace.

General

[Debby]

I am really really happy that you are where your are at in this battle.

I would like to know what state & what city did this Ketamine Coma happen???

Thanks.
DebbyV

[General]

Originally Posted by Debby

I am really really happy that you are where your are at in this battle.

I would like to know what state & what city did this Ketamine Coma happen???

Thanks.
DebbyV

The Doctor cam from Texas but the procedure was conducted in Burlington, VT. The only bad news is he is leaving this month for Afghanistan with the Army for 18 mos. Do not despair..... he's not the only guy doing this. I had not added this in before but because they also did rapid detox while I was in my come AND worked the foot to promote blood flow (nerves do not receive "direct" bloodflow), they were perhaps able to bill insurance for the rapid detox even if getting $$$ for the ketamine treatment is difficult. God Bless and Peace and remember our familiy in harms way. May they come home soon and safe.

General
USAF E8 Retired

[SandyRI]

Dear General,

Congrats on your recent success with ketamine. I was aware that there was ketamine available in Rutland, Vermont - Jim Broatch of the RSDSA includes that location in his ketamine doctors list. How incredibly interesting that there is a group involved in Burlington with ketamine that is willing to do a short term coma on an experimental basis. I have not been able to discern from your posts (or maybe I missed it?) whether or not your insurance covered the procedure. Are your doctors going to bill you for it or were they willing to do it for free in the event it is denied? I am assuming that you have Tricare (which is so much better than my lousy United Healtcare!!). Since you went through the ER did the authorization for the procedure automatically get approved? Is the hospital part of a military base or is it civilian?

By the way, my dad is a retired 2 star general - USMC - he was a fighter pilot, but was in the reserves until he got activated for the first Gulf war. It's funny that you call yourself that, I am "home" visiting with my mom and dad now at their beach house in NJ for a few days, everyone around here calls my dad the "General"....

It's always so great to hear success stories from others. I've have 23 low dose ketamine infusions (I'm at 150 mg), I started the 10 day outpatient protocol with Dr. Getson (who I LOVE) in April of this year. I am off all opiods and have returned to my FT job after a one year LOA. But I still take Fiorcet for head pain on a regular basis and will likely need my second occipital block soon - owwww. It's a battle - I am not perfect and pretty nervous about my future. Right now I am taking one day at a time.

Detox for me from Fentanyl was tough - I took Suboxone for about 10 days or so in May after I tapered down to the lowest dose patch available, but it still took me at least another month or so to feel good - I lost my appetite, felt miserable, had zero energy, etc. I hope NEVER to touch that stuff again as long as I live. I am extremely envious that you were able to "rapid detox" in just 1 day. That sounds pretty cool (except for the losing your memory part).

Wishing you the very best of luck - I truly hope that your pain relief lasts a long time, and that you regain the full use of your foot back.

XOXOX Sandy

Originally Posted by General

I ended up in the ER 3 weeks ago two nights in a row with pain so bad I seriously wanted them to amputate the foot and I would take my chances with phatom pains. Fortunately, a procedure we'd been researching for two years and begging to get into the trials of, was recommended to us in the ER. It's a Kedamine induced coma. I was placed in a coma for about two days while they introduced the Kedamine to my system as well as performing a rapid detoxification of my system. I never realized that pain medicines can eventually turn against you and cause you even more pain. I won't lie to you. There are side effects such as short term memory loss (I don't remember the entire week before I went into the hospital), some holes in long term memory, vision impairment and some dexterity issues. Most of these are short term and you'll get them back. The only thing hanging over me now is the loss of memory, which is certainly a rather odd feeling. The good news is however controversial this treatment may be, I am currently in remission with about 90% of my pain gone. I am walking for the first time in two years without a cane. I HIGHLY recommend looking into this procedure. It scared the hell out of me, but I am so happy to be without pain for as long as this will last. Take comfort in knowing that this disease is one of the most studied diseases at the moment and many new trials are be conducted all over the States. Doctor Ian Black brought the treatment to Vermont from Texas and I was the third person to ever have it done here. I hope some of this help you and you'll be in our prayers. God Bless.

General