Coma treament for RSD
 

Does anyone know if there is anywhere in the USA that is doing the Coma Treament for RSD? Thank you for your help!!

Hi Dragracechick,

From what I understand the Ketamine Coma Treatment ISN'T available anywhere in the USA, they only do the Coma Treatment in Germany and Mexico and it is only usually given to the people that have really severe RSD.

Dr Schwartzman (sp?) is a doctor in the US and he does send some of his patients with severe RSD to Germany for the coma treatment.

Hope this helps and Welcome to the Forum!!!

Alison

Hi Coma treatment
 

Hi ali, Ali is right, dr. schwartzman, drexel university, you can get his name and number there under faculty and staff, is sending severe cases of RSD to Germany in the past and I belivie now he too is sending them to Mexico. That part I am not certain of. The other doctor referring many people for coma treatment is Dr. Kirkpatrick in Tampa. He has an international website. Good luck.Oh Dr. Kirkpatrick also refers his coma patients to Mexico.

http://rsdfoundation.org/en/Cantu_MD_Consent.htm

Here is a link to information about the ketamine trials being done in Mexico. Btw when I spoke with the German doctor directly a couple of years ago the cost was substantially less to have over there, roughly half of what they charge in Mexico.

MsL

Two doctors direct you to coma
 

Dr. Schwartzman, drexel college of medicine, philadelphia, pa
Dr. Kirkpatrick, Tampa, Florida. type both their name in google search and their names and numbers come up. Also search this site Key word coma and will find many infomative threads. good luck,cz

The Ketamine induced coma treatment is illegal in the US - the FDA have not approved it. As others have said, Germany and Mexico are he only places where this highly experimental treatment is available. An alternative, FDA permitted, treatment is available in the US using a sub-anaesthetic dose of Ketamine which is given by IV infusion over a period of 5-7 days. From A UK perspective this would still be regarded as experimental although I don't know how it is officially viewed in the US.

I tried a few months ago to get aninitial appointment with Dr Schwartzman - the first appointment was December 2009 so at that time it was approximately an 18 month wait to see him. I have heard as long as 3 years quoted but if you call his office they can give you an up to date idea. Makes our NHS seem not too bad after all!!!

Below is the contact information for Dr. Rohr in Germany, Dr. Schwartzman sends his patients to him in Germany to have the Ketamine Coma treatment.

You can contact him directly and I do not believe that there is such a wait list as is with Dr. Schwartman. Costs are substantially less in Germany compared to the US and Mexico. I'm sorry I do not have the phone number handy. He does speak English but it was better to have my husband communicate with him in Germany directly on my behalf. I have not gone ahead with the Ketamine Coma treatment, but I will if things progress for the worse. Saarbrücken is close to Frankfurt.

Kilinikum Saarbrücken

Dr. med. Hans-Peter Rohr
Klinik für Anästhesie, Intensivmedizin
und Schmerztherapie, Abteilung Spezielle Schmerztherapie
Oberarzt
Winterberg 1
66119 Saarbrücken
Germany

I would be curious as to the costs for Germany. My research showed Germany was almost 2x the cost, and the wait is 1-2 years. Dr Kirkpatrick in Tampa, FL can push patients through the Mexico study pretty quickly, and Dr. Schwartzman keeps referring more and more to Mexico due to the delays in Germany.

The care in Mexico is out of this world, absolutely top notch, and Dr. Cantu is possibly, the nicest, most compassionate, loving and competent Doctor I've ever met in my life. I had heard and read such things about him before, but you can't really understand it until you are under his care. He gets it.

Mexico coma costs approx 32k (for the dr and hospital costs)
plus airfare, hotel, taxis, food for family

50k is a safe number + boosters following that which over 3 months (booster every 2 weeks) will cost you another approx. 10k-25k depending on how you do it.

It's expensive no doubt, but it's a frikken miracle treatment for the vast majority who've gone through it. I've witnessed it personally.


The above link will show you the pre and post coma videos of the patients who've done it.

I'm happy you had such a positive experience with the doctors and treatment in Mexico NSMD. Reading the patient information I have no doubt one would be in good hands. Are you an MD by chance?

Attached is a copy of the Patient info from Germany for those who are interested. Email and telephone numbers are on this document.

The costs according to my direct consultation in Germany in 2006 would be approximately 12,000 euros for the hospital & Dr costs, considering the current rate of exchange that puts the hospital bill just a little over 15,000 US dollars, depends on the exchange rate when you go. I do know from experience that hospital costs in Germany are substantially less less than in the USA as a private patient.

I have a hard time seeing how this would cost 50K even with an additional cost of boosters when retuning home.

MsL

Interesting MSL, thanks for sharing that document.

The $12k euro quote, is that if you enter the study privately with the german doctors and hospital or if you go through Dr. S.

That is far less expensive than I was originally quoted/told.

As for Mexico:

32k - Dr's/Hospital stay (includes 1 free booster)

Variables:
How many family members are traveling with you. Lets assume 2-4.

Rooms: 100 night x 21 nights on average = 2100-4200 in lodging.
Food: 50-100 day for 2-4 people x 21 days = 1150 - 2100
Airfare: Many RSD patients need to fly first class - our airfare costs totaled 6,500 - for the various family members. At minimum on coach your looking at 1500 up to 6500 or so.
Taxis - Depends - 150-500 *incl airport to and from*

That's approx 45k right there...if you need to stay longer or need additional boosters, etc, costs climb. For us, we were in the mid 50's range for Mexico.

Boosters can range from 300-day to 2500 day.

Yes there are many variables to consider depending on an persons circumstances. Personally I would love to fly first class but I've learned many tricks for travel in coach.

That quote is direct from the source, I saw the dr's in Germany as a private patient. I did not go through Dr. S. although I was told I could be refered to him if I wanted.

Dr Rohr said that he knew thay were charging double elsewhere, it is a different medical system in Germany, combination public/private. No wait list for private patients.

The standard of care is very high as I'm sure it is with the dr's & staff involved in the treatment in Mexico. Ultimatley it boils down to what one is most comfortable with.

Did you have this done as a patient or are you a family member? I'd love to hear more about how it has helped. Is it a permanant remission?

Best

MsL

Hi,
Is it possible to self referred to the doctor in Germany and Mexico for the coma treatment?
Thanks,
Numb

I don't know about Mexico.

As for Germany we just emailed the Doctor directly and explained our situation. We were already planning to be in Europe so we made an appointment for a consultation during that visit.

If I had decided to go ahead with the coma treatment I would have had to have had all the pre-trail tests completed at home before I would have been accepted. I opted not to do the coma treatment at that time.

MsL

Dear All
I don't want to offend anyone and have no personal knowledge but the perception here in the UK is that Mexico is a dangerously un-regulated medical environment. Given our highly regulated system in the UK, we are horrified that drugs that can be bought over the counter in Mexico are only available on prescription in the UK.

I can only say that if I was going to risk a highly experimental procedure which put me in a coma for a week, I would want to be sure that it was being done in a well-regulated medical environment. Otherwise, I am not sure how it is possible to feel "safe".

It is true, many prescription drugs are not regulated in Mexico such as antibiotics, etc. What IS regulated are pain meds and benzo's (Xanax). Many of the Doctors in Mexico (that I spoke with anyway) are very unhappy with the open state of affairs regarding this practice and would prefer an approach more like the States or I assume the U.K.

As for the medical care in Mexico, all I can tell you in that the San Jose Hospital is absolutely state of the art, it's a private hospital and also a teaching hospital. I believe it's considered the top hospital in the entire country and it shows.

Each and every single doctor we met with just blew us away. We've been so used to being treated like a number in the U.S. it was just inconceivable to us that they could care as much as they did and/or spend the sheer amount of time they do with you on an individual basis.

What is also nice about Mexico is the unfettered access during the coma and throughout the ICU recovery period for the patient. Only one person is allowed in at a time during the coma itself for 5 days, but you can stay as long as you like. I've heard there are time limits in Germany. During the ICU recovery stage, you can stay in the ICU room with your loved one as long as you like, which is usually 24 hours a day, hah!

After ICU - you get moved to the 8th floor, the nurses don't speak english very well, but they are very used to the coma patients by now. The rooms are top notch, and high end. Oh, and the ICU nurses are just incredibly good and most of them speak English.

I've realized there are two Mexico's. Border Mexico, which we see on T.V., and the real Mexico. Monterrey is a truly cosmopolitan city. I've traveled throughout Europe and abroad and Monterrey blew me away. Very sophisticated. Expensive too it should be noted....the most expensive place to live in Mexico by far.

Anyway, I wish any and all who decide to take this route and wish them the best of luck. I am sure people would be please with either facility.

As for me, I am a family member. Our loved one has had a TREMENDOUS recovery from this horrible disease. She's not out of the woods yet entirely, but there's been a 95%-98% improvement, it's all been entirely past our expectations and even feels a little unreal. I personally am so used to being in 'crisis', that I am waiting for the other shoe to drop. I don't expect it to, but as a caretaker you start to adjust and lower expectations sometimes as a survival tool.

Keep praying and hoping. The more patients who go through the procedure, the more data is collected. Hopefully it will make a convincing enough case in the U.S. where the FDA won't require a double blind placebo control study.

I can't even imagine how horrible that would be, to put patients through a 'placebo' coma, but that's what they are asking for prior to approval.

I want to make a blanket statement saying, KETAMINE WORKS, but I know that some patients haven't had the full recoveries that they would like. I know my loved one hasn't had a full 100% remission yet, but it's about as close as it can get and we only expect it to get better over time.

I pray for each and every one of you who deal with this each day, RSD patient and caregiver alike.

Hi MSMD,

I just wanted to let you know that I'm very happy for you that your loved one is doing so well following the Ketamine treatment.

Whether it is done in Germany or Mexico it is great that they are doing these experimental clinical trials and that he/she has responded so well. We will all benefit from these trials in the end directly or indirectly thanks to your family's involvement.

Wishing you and your family all the very best.

MsL

I've been talking and emailing with Dr. Leverone in L.A. he doesn't do the coma, but he does do ketamine infusions that are outpatient. he does them like 3 different ways... if anyone wants more info about it i can explain more, or give you his number/email. i'm hopefully having one done in a month.

He's a nice man Msdrea.

What's neat about him is that he offers what would be considered high dose, outpatient, 4 hours infusions.

To put it in perspective. And again, these are just the numbers I know of and also why those CPT codes I posted earlier are so important. Alot of this stuff is getting covered now!

Old school low dose in patient treatment used to be 15mg-40mg an hour, 24 hours a day for 5 days. Can cost approx. 25k

2 Hour outpatient (125 mg/hour) - you can find these for 700-1000 I believe.

4 hour outpatient (135 mg./hour) - w/Dr. Kirkpatrick in Tampa FL is $2,500 a day, and he will do up to 3 days in a row.

4 hour outpatient (300-400 mg./hour) - w/Dr. Leverone in L.A. is $2,000

Mind you, the Doctors surmise (some anyway) that the effectiveness of Ketamine is dose dependent and duration dependent.

It's still very much a guessing game, but most of the coma patients i know feel, "The more/higher amount of Ketamine, the better".

A list of doctors and their methods and fee's should really get put together as a resource. More and more Doctors are starting to offer this treatment. Hell, Dr. Kirkpatrick has now setup a 2 or 3 day continuing education class for Dr's at his facility in Tampa so that they can start offering it themselves.

Pretty exciting stuff!

Wish you all the best, and remember those CPT codes! Also, when you talk to your insurance company, let them know that Ketamine is a FDA approved to treat acute pain, reference the CPT codes, and also let them know the treatment has "Durability", meaning, it provides lasting relief. How long, is not fully known. I wouldn't mention anything about it being experimental as they aren't big fans of that, but, as a whole, Ketamine has been used for pain for a long time and it IS approved by the FDA for treating pain.

Do your research guys/gals, and pick your Doctor's carefully! Our first Doctor set us back a year, the wrost year of our lives under his care.

Best Regards

Oh, in addition, to put it in more perspective.

Although each patient is different, the amount of ketamine they give you in a coma typically is thus: (It is weight dependent and also what a patient can tolerate, and if there liver enyzmes are good and a host of other variable, but this is just general rule of thumb stuff)

Day 1 - 250 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 2 - 350 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 3 - 450 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 4 - 550 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 6 - 650 mg/hour x 24 hours + bolus injections (extra infusions of K)

Each coma patient will typically receive in 5 days what a full blown hospital would use in its entirety in 6 months during the course of a year. That's a lot of Ketamine!

Again, this is just from what I've personally witnessed, but it can be different for everyone.

Also, they tend to give you Midazolam (3mg-10mg hour) to keep you calm.

You as well MsL. Might I ask, has it been successful for you and how long have you been out for, approximately? We're around the 3 month mark.

Hi MSMD,

I did not go through with the Ketamine treatment, I think I mentioned that.

Dr. Rohr suggested that I might want to try IV lidocaine treatments first, since my pm dr in Canada was able to do so I started that. I improved immediately and significantly with the lidocaine so we decided to hold off on Ketamine. For me lidocaine has been very successful and I became much more functional after we started that. The Keatmine coma is after all a very dangerous treatment with many risks and after weighting the pros and cons I decided to put Ketamine on hold. I seem to be the poster girl for rare complications and side effects so I'm very cautious now.

Dr. Rohr did not have much hope that the low dose ketamine treatments would make any significant difference. I understand he published a paper to that effect based on their clinical trials completed in late 06.

Correct me if I'm wrong but I believe the boosters you are discussing is a different matter after having already having had the major reboot with the coma, it is my understanding that the boosters are neccessary.

Just a thought...

Considering the lower costs and lower risks of treatment for IV Lidocaine vs. Ketamine, I'm wondering why there are not many doctors offering Lidocaine to patients?


MsL


Warm regards,

MsL

Hi MsL:

My partner had bier blocks (lidocaine infused into the arm). These were tremendously helpful originally and then became ineffective within 7-8 months. Furthermore, to complicate matters, the IV was being put into the original injury site (we didn't know any better at the time) which we believe caused massive secondary spread.

I am glad you're having such success with IV Lidocaine. I personally haven't seen enough RSD/Lido* studies to prove it's long term efficacy but our short experience with it showed a temporary improvement.

But as they say, RSD Patients are like Jacks in the Box, you never know what you're going to get.

And I don't think you're alone in that feeling of "if something could go wrong, or if i could get the short end of the stick, I usually do" ...that seems common amongst RSD folks.

RSD Sucks.

Hi MSMD,

Just to clarify an IV Lidocaine infusion treatment is not the same thing as a beir block using lidocaine.

The IV lidocaine treatment is given intravenously, in my case they insert the IV in my hand, give me a 100 mg bolus and then add 700 mg to the saline solution bag, the infusion runs over 2 hours. We must be monitored on a heart monitor during the infusion. My pm Dr. got the protocols from Dr. S in Philadelphia.

I have very quick relief of pain and my range of motion returns immediately. Typically other than feeling tired I feel like I could dance on my toes all the way out of the hospital. It also helps my brain, as typically I find I'm right back to being able to think and speak clearly. This lasts me for about 2 weeks than it is like a battery wearing down. There does not seem to be any long term side effects with taking this.

Because of the large number of RSD patients my pm Dr. is now treating with lidocaine he has started to administer the lidocaine subcutaneously with a small inexpensive pump (it looks like a baby bottle). It doesn't need to be monitored on a heart monitor and the patient is sent home with it. The subcutaneous infusion runs for about 8 hours. I tried it twice but I feel I have better results with the IV method so despite my doctors efforts to switch me onto that he finally agreed to continue with what works best for me. Other RSD patients find it works just as well as the IV. This method of deliver is allowing the pain team here to treat more patients and at a lower cost.

I don't believe there are many long term studies that have been published about this, most likely because it is not going to make anyone the big $$$ like ketamine is starting to do.

You are right RSD is like a jack in the box and it does suck! Mainly it is not one of the "Sexy" diseases that attracts enough bright minds and money for research. I think that is starting to change but slowly.

Wishing you and your family well.

MsL

So what is the nature of the improvement. What theoretically is happening,physiologically to the body in a coma state with infusions? Is the resting state breaking the pain cycle established in the brain, repairing other organs, nerves, circulatory systems etc? What are doctors, reseach clinicians , and others involved or interested saying about the effectiveness of this approach as to what exactly is happening to cause temporary or possibly long term remission?

Richard,

What an excellent question, and boy I wish I could answer you properly, but I can't. I'm not an M.D.

There are more and more studies being published regarding the efficacy of Ketamine benefiting RSD.

I honestly don't know why it works. In fact, our primary PM Doc said to us, before we went, "Well, we've gone as far as we can with meds, you've tried everything...the coma thing scares the hell out of me, as a M.D., it doesn't really make sense to me why it works, but if it does, who cares. The only option you guys have left is an alternative approach or make peace with the pain mitigation you're at right now and live with it."

I am paraphrasing poorly. He was scared for us, he would've preferred us do the 3 day out patient, but our reason for not doing that was the reports on that don't show as long term results as the coma.

As for the relief, we couldn't touch the right side of my wifes body for the last 2 years. She was on about as high dose opiates as the doctors in Mexico anyway had ever even heard of. (Talking thousands of miligrams of Oxy a day + 1/2 dozen other meds 4-5x higher than what is considered "high dose".

The allodynia (burning sensation) is completely gone and has been since she's come out of the coma. Her skin can be touched, stroked, squeezed, handled. Her mobility (she had severe dystonia) has returned incredibly well. We thought the limb was frozen in place as the arm and hand hadn't opened or moved 'at all' in a whole year. Atrophy had set in. The burning, stabbing, electrical jolts, shooting, aching...it's all gone.

Now, with that being said, let's not get too crazy. She has had some of this pain return, albeit to a MUCH lesser extent...and the neat thing is, although she might feel some pain some days (this usually is due to the PT), the pain usually recedes the next day. She has occasionally had to take a 'pain med' a couple days for 'acute' pain, but we're talking 15 mg. of oxy maybe 2x in a day.

She continues to receive boosters (infusions) every 2 weeks. She is nearly done with this regimen. This most recent booster, she hadn't had any RSD pain whatsoever in these last 2 weeks so we weren't entirely sure about spending the money to get it done, but it's highly recommended to get boosters every 2 weeks for the first 3 months after the coma so that's what we're doing.

Our lives are 'slowly' feeling like they are returning to normal. I think we are/were so used to living in crisis almost every second of the day that it feels still a little bit unreal.

Everyone knows it works here because my wife and I actually argue again! Haha, that hadn't happened in a long time. She can eat real food again, has an appetite, can sleep 8-10 hours uninterrupted, can leave the house and do grocery shopping, pick the kids up from school, be a wife, mom, daughter, etc.

I'm a realist. I know this could come back. What is a comfort to me however is that I now know we have something that can actually make it go away again however; ketamine.

One of the issues of course is financial. This stuff is expensive. although it's looking like insurance companies are starting to step up to the plate. I haven't even tried to submit our bills yet, but will take on that gargantuan task soon and will report back my results.

Again, I don't know why it works, not really anyway. I'm not entirely sure anyone truly knows, but SOMETHING is working!

I hope that low dose ketamine becomes a standard early measure for those recently diagnosed. I suspect it would make a HUGE difference. For those who have it unbelievably bad like my wife did, if you are ok with the risks....trust me, we were scared too despite all the research we had done...and don't have the financial means, many patients have started foundations and fund raising efforts. It's hard, because alot of us are so private and it's hard to 'put your stuff out there for everyone to see'.

I hope this helped some.

Actually, using ketamine in any delivery form to treat RSD is not FDA-approved.

Where have you heard this?

Ketamine is FDA approved for (for the last 30 years) for outbreak pain.

Read the following:

http://rsdhealthcare.org/PatientInfo/Reimbursement.htm