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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

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 [COLOR="blue"][B]Dr.[/B][/COLOR] [COLOR="blue"][B]Schwartzman's[/B][/COLOR] response is in [COLOR="Blue"][B]blue[/B][/COLOR] 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?

[COLOR="Blue"][B]We have done 31 deep ketamine coma patients. At least five were older than 40. The oldest was 54.[/B][/COLOR]

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?

[COLOR="blue"][B]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.[/B][/COLOR]

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

[COLOR="blue"][B]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.[/B][/COLOR]

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?

[COLOR="blue"][B]The cost for the procedure is $25,000.[/B][/COLOR]

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 :angel:

[B][U]My history with RSD:[/U][/B]
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.

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