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  • CNN video link re: RSD and "coma therapy"

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    Old 09-29-2006, 10:54 AM   #1
    LeftyKid
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    CNN video link re: RSD and "coma therapy"

    The American Pain Foundation had this CNN video link in their latest e-newsletter. I got approval from the board moderator to post it here as a reference for anyone wanting more information on "coma therapy" (ketamine infusion).

    The video shows a successful "coma therapy" with a teenage girl suffering from full-body RSD.
    If you don't want to watch the video, the link also has a transcript of the story.

    [url]http://www.rsdfoundation.org/en/CNN_RSD.htm[/url]
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    Old 10-03-2006, 04:26 PM   #2
    Skooze
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    Re: CNN video link re: RSD and "coma therapy"

    Hi Lefty

    This is a must seen site to visit. And thank you moderator for allowing Lefty to post this. It is a real eye opener All of you looking for a way to rid your body of this monster that has invaded or bodies and minds, you must watch this video. The FDA has not approved Ketamine infusions for the US., but they are having remarkable results in Mexico and Germany. They put you in a coma for 5 days, with ketamine infusions. When you wake up there are side effects (hallucinations) for about 2 days, then you are back to pretty much normal. They say it's like your computer crashes, and they try and reboot it. These patients are now living somewhat normal lifes. Dr. Swartzman is doing these procedures. They still have a little pain afterwords, and get a low dose injection, and they are leading normal lives. I encourage ALL OF YOU to go to this site.

    I'm curious to see what others think of this. Keep us posted. And thanks Lefty for turning is on to this valuable site Aloha Skooze

     
    Old 10-03-2006, 05:13 PM   #3
    sharon1030
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    Smile Re: CNN video link re: RSD and "coma therapy"

    Hi Guys,

    I didn't view the link, but I did see the program when it was on CNN...Paula Zahn's show, right? I think it's great that this girl is doing well, but the coma thing scares me to death. From what I understand, Dr. Schwartzman doesn't actually do the procedure, but sends patients who he thinks will benefit to Germany to have it done there. I would want to see data down the road about how the patients who've had this done are doing. From what I remember from the program, this girl was doing well, but wasn't pain-free. I'd like to see how she's doing in a few years. Maybe if she's still as low pain as she was after it and her mental faculties are intact (I'm just concerned about the coma part), I'd consider it. There is the ketamine awake technique that I know they're doing in Australia (maybe elsewhere as well), but I'm not big on this coma thing.

    Sharon

     
    Old 10-04-2006, 10:58 AM   #4
    LeftyKid
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    Re: CNN video link re: RSD and "coma therapy"

    Hi Guys

    Glad you two responded to the post - I didn't want to be the first one to state my opinion on this since I was the one who posted the link.
    This treatment does seem pretty successful, but I have concerns. I'm glad that some people are getting relief and most importantly that there are docs out there that are proactive and willing to try new treatments. That helps give me some hope.
    My main concern is the whole idea of being put into a coma. Very frightening. Too many risks. Also, the fact that this treatment is not available in the US concerns me. Why is it not available? There must be reasons.
    Since it is only available in Germany, Mexico, and possibly Australia, that means that anyone from the US must be wealthy to afford the treatment. That's very sad. Few things anger and upset me more than medical treatments only being offered to those that can afford it.
    I wonder if we all asked our PMD's about this, what would they say? It would be interesting to hear their opinions, or even if they've even heard of it. My next PM appt is in Dec - I'll make a note to ask about it.
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    Old 10-04-2006, 01:42 PM   #5
    mcgriffin
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    Re: CNN video link re: RSD and "coma therapy"

    all,

    This scares the ****** out of me! One way to get some sleep I guess but man this is really scary . I have pm appt in morning will put on my list of ???, what's one more , right?
    like most everything else available in other countries but not here - probably has alot to do with drug companies! sad but I'm starting to believe this more and more.
    i got a really good book today- am i allowed to mention name ??? sorry but i don't know all the rules ,yet.
    peace, robbin

     
    Old 10-04-2006, 04:37 PM   #6
    sharon1030
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    Smile Re: CNN video link re: RSD and "coma therapy"

    Hi Guys,

    Robbin, that was funny about this being a way to at least get a little sleep .

    Lefty, I'm with you on the mess we have in this country with insurance and people not being able to afford treatment...I think it's up to 45 million now...people who don't have insurance...very sad.

    Hang in.

    Sharon

     
    Old 10-04-2006, 04:51 PM   #7
    palarin
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    Re: CNN video link re: RSD and "coma therapy"

    Hi Everyone,

    I received an email about the show and procedure. I watched the video and was curious about it because it focused on teenage girls. However, I thought if it worked for them, maybe it could work for me. I'm sure many of you feel the same way I do in that I would do just about anything within reason to get my life back.

    So, I sent Dr. Schwartzman an email. After explaining that I have Systemic RSD and what I have been through the past 6 years, I asked the following questions and Dr. Schwartzman's response is in blue below:

    1. How many cases have you done to date? Out of that number, roughly how many of those people were at least 40 yrs. old?

    We have done 31 deep ketamine coma patients. At least five were older than 40. The oldest was 54.

    2. If you have some patients that are 40 yrs old, are there any criteria that you use in order to select them as a good candidate for this procedure?

    There are the same criteria for all patients. They must have refractory RSD that has failed all treatments. They must not have severe medical illness that would preclude anesthesia.

    3. Is Amnesia a long term effect that everyone experiences? Does it normally go away?

    We have had no permanent mental problems with any patients. The side effects of the coma and treatment usually abate in about one month. Some patients feel well almost immediately.

    4. Do you have a rough idea of what the cost would be for the procedure, doctor’s fee, and hospital bill because I know that Medicare/the insurance company will not pay for something that is not approved by the FDA?

    The cost for the procedure is $25,000.

    Well, I just wanted to share this information with everyone. I too am a little scared about the coma part however I am going to pray about this and talk with my doctors before even thinking about scheduling an appointment with Dr. Schwartzman.

    God Bless you all with less pain each day.
    Marie

    My history with RSD:
    Aug 29, 2000 – I had Plantar Fasciitis Endoscopic surgery on my left foot.

    Sept 15, 2000 – I then had Plantar Fasciitis Endoscopic surgery on my right foot.

    Nov 2000 – I started experiencing a number of RSD symptoms such as; burning, swelling, stabbing, etc..

    Nov 2000 – Early Jan 2001, I saw a total of 6 specialists, including one at The Cleveland Clinic, who sent me back home because he said that there was nothing he could do for me.

    Mid Jan 2001 – I was diagnosed with RSD.
    Feb 2001 - Nov 2001 I went through 12 spinal blocks, physical therapy, & tried various medication.

    Feb 2002 – I trailed the Spinal Cord Stimulator to see if it would benefit me any.

    March 2002 – I had my 1st Spinal Cord Stimulator implanted.

    April 2002-Feb2004 - Continued Pain Therapy thru meds and Spinal Cord Stimulator

    March 2004 – I had my 1st Spinal Cord Stimulator replaced due to a bad lead & battery problems.

    Summer of 2004 – My RSD began to spread, my hands were numb & arms were burning. My legs would give out without warning and I also experienced incontinence

    Sept 2004 – I had my 2nd Spinal Cord Stimulator removed so that an MRI could be done; my Dr. was suspicious about a possible Syrinx in my spinal cord. A Syrinx was found in the neck area. My family doctor and pain management doctor agreed that I was permanently disabled and would not be able to return to work. They told me once again that I really need to accept what has happened to me.

    Oct 2004 – I went to 3 different Neurologist who all agreed that the Syrinx was not the cause of my problems (numbness, burning and swelling in hands, legs giving out, & incontinence).

    Dec 2004 – I saw a hand specialist regarding the numbness, burning and swelling in both hands/arms. After reviewing my history, the hand specialist told me that he didn’t think that I had RSD in my body (who did this guy think he was after everything I have been through, telling me such a thing)? He recommended that I see a Rheumatoidologist for further testing.

    Jan 2005 – I had my 3rd Spinal Cord Stimulator box implanted on January 12, 2005.

    Feb 05 - I went to see a Rheumatoidologist at the Ohio State University Hospital because my family doctor asked me to go. We spoke with the Specialist, who felt that my RSD was becoming systemic in which all extremities are affected. He wanted me to see one of his associates because he thought that I would be a good candidate for an experiment that was being done on RSD patients using Botox. I was scheduled to see another Specialist at the hospital on June 9, 2005.

    March 05 – I went to see my Pain Care Specialist this month. We decided that it would be my best interest to begin building my body up to a high enough level of morphine.

    April 05 - I then returned to my Pain Care Specialist and told him, who I had seen and what I was told. After examining me, he agreed that my RSD had become systemic however he DID NOT agree with injecting Botox or any other type of poison into RSD patients. I explained to him that I also started having RSD attacks in my internal organs, which are so very, very painful. The only thing I can do currently is take oral morphine and cry/scream through each episode until it is gone. Normally it lasts for 8hrs or so but one time I had an episode that lasted for 3 days. It by far was the worst and I thought that I was going to die.

    May 05 – I continued trying various medications to help calm down my pain.
    I applied for Social Security Disability

    June 05 – July 05 – I continued trying various medications to help calm down my pain (none of them worked, except for large doses of morphine) I trailed tested the morphine (Intrathecal Infusion) pump and it seemed to help me.
    I was also turned down for Social Security Disability, however I appealed right away.

    Aug 05 – Sept 05 – I continued taking large doses of morphine to get my body used to it.

    Oct 6, 2005 - I had the Intrathecal Infusion Pump implanted and began therapy to adjust the amount of medication that I would need.

    Nov 2005 – I was granted Social Security Disability due to permanently disabled from systemic RSD and severe depression.

    Dec 2005 – Present: I continue to see my pain care specialist each month so that my morphine pump can be refilled. We have currently increased my dosage to over 50%. I am down to one oral morphine tablet a day. The goal is to eliminate all oral morphine tablets eventually.

    Not only do I suffer from systemic RSD but also severe depression as a result from this horrible disease.

    Note: I use an electric scooter in the house to get around and I have a wheelchair in our car for when we go out.

     
    Old 10-05-2006, 08:34 AM   #8
    LeftyKid
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    Re: CNN video link re: RSD and "coma therapy"

    Marie-
    Thank you for contacting Dr. Schwartzman and posting his responses here. Good info straight from the source. I'm still confused about who does the actual surgery - Dr. Schwartzman or the surgical team in Germany where he sends his patients?
    $25,000! Geez!
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    Old 10-05-2006, 09:29 AM   #9
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    Re: CNN video link re: RSD and "coma therapy"

    That does not take into consideration the airfare and hotel rooms and other expenses in going to Germany. I think you would not be able to go alone and would need someone to help you so that is two tickets and two of everything else incurred while staying there and traveling. It could be quite a large amount of money. Regards, Lil

     
    Old 10-27-2006, 08:29 AM   #10
    msswank95
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    Re: CNN video link re: RSD and "coma therapy"

    i wouldn't give up on all insurance companies, especially with help from human resource departments or maybe congressional representatives if it is a medicaid/medicare issue.

    my daughter was born with a rare birth defect and had many problems associated with it and not many doctors that know how to deal with it. we found a doctor in california (we are in texas) that was, for free, evaluating and directing her care and found a doctor in the UK that could help her. our insurance, after going through HR, was willing to send her and us, her parents, and pay all expenses as necessary medical treatment.

    also, i had a surgery done that was not FDA-approved and was still experimental and we also got the insurance to cover it (and it was over $70,000) by working with my husband's company's HR department. most companies pay a huge portion of your medical costs before the insurance company benefits actually kick in - it is part of the contract between the company and the insurance company.

    so, always be willing to push the issue with anyone you can think of! you might be surprised at the results.

    oh, and about my daughter's care, we ended up finding a British doctor in American through the CA doctor, so we got to go to him (although i would have loved visiting the UK). again, everything was taken care of and the doctor even waived his fee for us.

    Last edited by msswank95; 10-27-2006 at 08:29 AM.

     
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