RSD and Kedamine Trials
 

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

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:grouphug:

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.

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

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

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

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

General,
Thanks for the info.

And I do think of them. We have a grandson that we raised who is in the Marine Corp. He just came home from Okinowa & will be going into infantry training again before being shipped to Afghanistan next year.

I have seen a doctor who wants to try a lower extremity lumbar sympathetic ganglion nerve block with Botox in it it. That will be after I have an EMG next Monday, which btw I am NOT looking forward to, to make sure I don't have entrapped nerves in my feet. I have to pay for the Box.....about $250 to $300 for a tiny vial.

DebbyV

The nerve block can actually be a pseudo cure if your RSD is diagnosed within the first 3-4 months. Here's the catch.... the good doctors are reluctant to diagnose RSD feeling that it is a dumping ground for anything an MD cannot figure out. After these months the likelihood of a block being effective drops exponetially. I have not had the box placed in my lower backand am reluctant to have any hardware instally with only a 50/50 chance of any success. They do however place the "spinal stimulator" outside your back for the first week or so and if it doesn't work they can remove it. My RSD is in my foot and I am scared stiff of them spreading it to my other leg in the process of conducting this treatment.

My best advice is stay as clear of pain meds for as long as possible and look into Ketamine trials in your area. Contrary to what you've seen on this board the 1-2 day coma IS being conducted. I know because I had it last month with great success. Now it's just how long will it last!

Good luck and God Bless.

General

General was a call sign given to me within the squadron and amongst friends. Most of my friends are pilots as I was a Flight Managers for the same squadron for 16 years. I always try to qualify my callsign with the caviat that I mean no disrespect. I have been doing this so long many of the pilots I grew up with are either retired, full bird Colonels, Generals or more. The Adjutant General for VT is a close personal friend and his brother, also a pilot and close personal friend has been lieutenant Governor for years and running for Governor this year.

Good luck with your treatment and you'll be in our prayers. God Bless.

General

Dear General,

My dad's call sign was "Spook"....and absolutely no disrespect was felt on my part. I'm just one of his kids (he and my mom had half a dozen of them...)

Do you happen to know what your dose was over the 2 day period? Just curious. And I'm also REALLY curious about the insurance part - is Tricare (or another plan) covering this for you, are you in a VA or other military facility (I remember you said the doc was being re-activated soon), or was this done in a regular medical hospital? So many of us have struggled for months and months (and many unsuccessfully, unfortunately) with insurance issues over ketamine treatments that it would be truly amazing to discover that a 2 day coma would be a covered benefit.

Sincere thanks for any additional information you can provide.

Sandy

In re-reading your posts I'm wondering if you were part of a trial?

Doctor List
 

Do you have the list your mentioned above from Jim Broatch? What about doing this in Germany? My mom is in Tel-Aviv, so Germany may be easier - especially if dealing with booster shots.

Thanks,

Talmon

My mom has been [likely] diagnosed with RSD following a hand surgery (Carpal Tunnel Syndrome) less than 2 months ago. So looks like we're still in that "golden period". What should I do next? Do you think this is the right time for nerve block? Is there a chance that this will send her into permanent remission?

Duras, now is the time to get aggressive with this condition. My undstanding blocks will give temporary relief and also can indicate or diagnose the condition as RSD. I'm vague on this because my wife refused them for three reasons. One is it is tempory and it can cause havoc if not done properly and can cause the spread of the disease. Also, overtime it becomes ineffective but it does give relief to many for a short time in most cases. I would have her visit the best pain specialist in Israel that she can find and through them gather all info on ketamine treatments. My wife, who has RSD, had this treatment (infusions and boosters) but here in the States there are several methods. My feeling is the more ketamine delivered in the early stages of this disease the better the results can be but not guaranteed. Germany does have an extensive treatment using Ketamine. My understanding it there was a recent death of a woman using the ketamine coma treatment causing this treatment to be on hold at the moment. My understanding there is an age limit on the coma treatment of around 50 and under but I could be wrong about this. I hope your mother well.

Hi Talmon - Jim Broatch is the Executive Director of the RSDSA. You can communicate directly with Jim Broatch at the RSDSA via e-mail. His e-mail address is jwbroatch@rsds.org. Hopefully he will have some advice for you. The ketamine doc list I have is at least 6 months old, and does not have any European docs included (just one from Australia).

Good luck. Sandy

I am looking at getting the same 5 day moderate ketamine with spinal cath and extensive therapy in Chicago. Dr. Lubenow from Rush hospital will being doing the treatment. I am wondering if anyone has had Dr. lubenow and how many boosters has anyone had so far.

thanks,for your column,for i am scheduled soon an just didn't know what to expect.still a little worried

Krank
I live in Aurora IL and I have seen Dr Lubenow. I saw him after all treatments failed and part of my new criteria for treatments is they have to be non-invasive. Dr. Lubenow agreed and offered Ketamine as a treatment. I was told to do it once a week for 3 weeks and then we would review the progress and go from there. Not once did Dr. Lubenow administer the treatment and the hospital was unable to get me scheduled for three weeks in a row so between the 2nd and third treatment a week lapsed. I had great results with the first and second one and was able to cut down my meds by 50%! But because I skipped a week between two and three it was not as successful. Dr Lubenow did not like that the success decreased and said that the next course was for me to do an invasive 5 day treatment with a cathadar in my spine (like a nerve block but more invasive) and when I said no to the invasive treatment he was enraged! He told me that I would die before I'm 30 and that I was hopeless and walked out of the room. I was so shocked and outraged that I never looked back. He has a horrible bedside manner and be careful if you have your own opinions on your treatment plan. This all happened in February 2010. Good luck with him as I found the whole thing traumatic. When he told me about the 5 day spinal cathadar treatment he did not say that they would still administer Ketamine. If that is what he is doing let me know and then maybe I will agree to the treatment.