Charles Mattocks creation; Trial By Fire a documentary on CRPS is complete. The first screening will be announced soon. In order to follow the film go to the trailer on YouTube
https://www.youtube.com/watch?v=aIB3V1BKaI8
on Facebook: Trial By Fire
on Twitter: Charles Mattocks
This has been a labor of love for Charles. His mom has CRPS. He has spent months interviewing, researching and filming people suffering with CRPS. The final editing is done and now the work of getting into film festivals and on TV is next. Please keep a look out for additional information on this amazing film.
Saturday, December 26, 2015
Saturday, October 24, 2015
Anniversary Of My First Ketamine
Fourteen years ago I had my first ketamine infusion. In October of 2001, I flew to Germany to be the fifth American to receive a ketamine induced drug coma. Here is my story.
In August of 2001, I was asked if I would like to participate in a study of ketamine on CRPS. At that time, it was hoped that this ketamine coma would be the cure for CRPS. My oldest daughter was in college and my youngest daughter a senior in high school. As a nurse, I knew the risks of a drug induced coma. There were potential complications related to bedrest such as blood clots and muscle waisting. There were the risks of infection from the foley catheter (drains urine), the central line, the endotracheal tube (goes into your lungs to attach to a ventilator) and the arterial line. There was the risk that it would not work. Unlike most studies where the cost of treatment was covered; we would be responsible for air travel, hotel costs, meals and the cost of the treatment which involved 10 days in the ICU.
What should I do? Do I give up the chance for a potential cure? Do I take the risk of leaving my daughters motherless? It was not an easy decision but ultimately I thought that the potential benefit outweighed the risk.
A family member had to be with you. My husband stayed home with my daughter. My father (who had ALS) volunteered to go into a nursing home for two weeks so that my mom could accompany me to Germany. Days before we were scheduled to leave, I began to freak out. I was not sure that I had made the right decision. Fortunately all did go well.
My mom and I flew to Frankfort Germany where my father's twin (my uncle) met us. My father and uncle were born in Germany and spent their first 11 years there. My uncle came to stay by my mom's side while I was in the coma. He drove us to Saarbruken where the treatment would take place and drove my mom to and from the hospital when she was permitted to see me. He was a lifesaver as I didn't have to worry about my mom as I was about to undergo this treatment.
It is not easy to put your life in the hands of physicians that you have only known for hours. The night before I was going to be put into the ketamine coma, I had dinner with the physicians conducting the test and the other American patient of Dr Schwartzman's. Ironically her name was Nancy as well. Additionally, she had been a medical student at Drexel when I was a patient there. We are pretty sure she was assigned to me. The next morning, IVs were started and off to sleep Nancy and I drifted. The ketamine coma protocol was evolving. The previous 4 patients were not given versed and ativan. They were psychotic until the ketamine was out of their system following their ketamine coma. We were the first two to receive these supportive medications. I was the first to be intubated because of my severe reflux. The "other Nancy" ended up also being intubated. Going forward this was part of the care plan.
In addition to being intubated, I had a foley catheter to drain urine, an arterial line so that arterial blood could be drawn to check my oxygenation, and pH. Blood pressure readings were done through the arterial line. I had a central line as well. PT came in and did passive range of motion to prevent some of the risks of immobility. I was given the ketamine for 6 days. It took about 24 hours for me to wake up afterwards. I did not have hallucinations. I did have some vivid dreams. Before they put me under; I had good thoughts about my daughters. I had good dreams about them.
I had some PT after the coma. I was very weak. At that time, I was pain free. The next six weeks would be the only time since my accident in 1996 that I have been pain free. At that time, I was taken off of all of my CRPS medications before traveling to Germany (except for my Medtronic Pump which was in the process of being weaned). There was no follow up ketamine protocol in the US. December 26th, 2001 the burning pain returned. I was devastated. I called Dr Schwartzman and he prescribed all of the medications that I had been on before ketamine.
Two weeks after my mom and I returned home, my father died from his ALS. He had made the ultimate sacrifice by spending 2 of his last 4 weeks in a nursing home so that I could receive this groundbreaking treatment. As far as he knew, my pain was gone and I was cured.
My ketamine roomy also had a return of her CRPS pain. She had been a surgical resident at Cooper Hospital in Camden. Nancy knew the head of anesthesia, Dr Michael Goldberg at Cooper. By February of 2002, thanks to Nancy's contacts, Nancy and I were receiving ketamine in the pre-op area of Cooper. Drs Goldberg and Schwartzman had to figure out an outpatient protocol. Over the next year, they tried a variety of dosages and frequency of infusions. Of course, I needed someone to take me to and from these infusions. I lived about an hour from Cooper at the time. My uncle came to the rescue. My Uncle Jack was retired. He drove to my house (30 min) to pick me up and then drove me to Cooper. He waited 6 hours as IVs were started, infusions started, a 4 hour infusion and time to recoup. His sacrifice of his time was amazing. One day that I was not receiving treatment, he fell down the stairs at home and broke his neck. The tables were turned and I was the one to drive to Jefferson and be sure that he was well taken care of. My ketamine infusions were put on hold.
It wasn't until 2003 that Dr Schwartzman got ketamine infusions approved at Hahnemann. I did inpatient infusions there about every 6 months. He also had an outpatient ketamine program. With all of these protocols put in place, in January of 2004, I returned to Germany for a second ketamine inducted coma. This time my husband went with me. The results were not as successful the second time. I did get CRPS pain relief for about a couple of weeks, but the arthritic and orthopedic pain in my foot remained. During this coma infusion they added Fentanyl to the mixture of medications given. They felt that I needed to be on an opioid to keep the non-CRPS pain in my foot calm. It was felt that it was this other pain in my foot that was fueling my CRPS pain. We now know that opioids cause inflammation which works against the ketamine. I was living proof of this.
Fourteen years later, although ketamine is not the cure that they hoped it would be, it is still the best treatment that there is out there for CRPS. Many of us still have to pay out of pocket for this treatment. Insurance Co's do not reimburse physicians enough to cover the costs of most physicians. Medicare covers Ketamine but other insurance companies do not. I still get regular ketamine infusions. Some worry about the long term affects of ketamine. Prior to going to Germany, I had a MRI and cognitive testing. In 2010, I had these tests repeated. There was no change in the MRI or cognitive abilities. Studies in Australia go back 40 years. They use ketamine for other conditions and their study shows no long term negative effects. Studies that do show negative effects were done on people who abuse ketamine and other drugs. Prescribed dosages of ketamine have not been linked to long term negative effects. There are long term negative effects of chronic pain.
I was fortunate to get in on the ground floor of ketamine infusions for CRPS. Now, I am the Executive Director of CRPS Partners In Pain Inc. We provide financial assistance to those who qualify so that they too can get ketamine infusions as pain management for their CRPS.
In August of 2001, I was asked if I would like to participate in a study of ketamine on CRPS. At that time, it was hoped that this ketamine coma would be the cure for CRPS. My oldest daughter was in college and my youngest daughter a senior in high school. As a nurse, I knew the risks of a drug induced coma. There were potential complications related to bedrest such as blood clots and muscle waisting. There were the risks of infection from the foley catheter (drains urine), the central line, the endotracheal tube (goes into your lungs to attach to a ventilator) and the arterial line. There was the risk that it would not work. Unlike most studies where the cost of treatment was covered; we would be responsible for air travel, hotel costs, meals and the cost of the treatment which involved 10 days in the ICU.
What should I do? Do I give up the chance for a potential cure? Do I take the risk of leaving my daughters motherless? It was not an easy decision but ultimately I thought that the potential benefit outweighed the risk.
A family member had to be with you. My husband stayed home with my daughter. My father (who had ALS) volunteered to go into a nursing home for two weeks so that my mom could accompany me to Germany. Days before we were scheduled to leave, I began to freak out. I was not sure that I had made the right decision. Fortunately all did go well.
My mom and I flew to Frankfort Germany where my father's twin (my uncle) met us. My father and uncle were born in Germany and spent their first 11 years there. My uncle came to stay by my mom's side while I was in the coma. He drove us to Saarbruken where the treatment would take place and drove my mom to and from the hospital when she was permitted to see me. He was a lifesaver as I didn't have to worry about my mom as I was about to undergo this treatment.
It is not easy to put your life in the hands of physicians that you have only known for hours. The night before I was going to be put into the ketamine coma, I had dinner with the physicians conducting the test and the other American patient of Dr Schwartzman's. Ironically her name was Nancy as well. Additionally, she had been a medical student at Drexel when I was a patient there. We are pretty sure she was assigned to me. The next morning, IVs were started and off to sleep Nancy and I drifted. The ketamine coma protocol was evolving. The previous 4 patients were not given versed and ativan. They were psychotic until the ketamine was out of their system following their ketamine coma. We were the first two to receive these supportive medications. I was the first to be intubated because of my severe reflux. The "other Nancy" ended up also being intubated. Going forward this was part of the care plan.
In addition to being intubated, I had a foley catheter to drain urine, an arterial line so that arterial blood could be drawn to check my oxygenation, and pH. Blood pressure readings were done through the arterial line. I had a central line as well. PT came in and did passive range of motion to prevent some of the risks of immobility. I was given the ketamine for 6 days. It took about 24 hours for me to wake up afterwards. I did not have hallucinations. I did have some vivid dreams. Before they put me under; I had good thoughts about my daughters. I had good dreams about them.
I had some PT after the coma. I was very weak. At that time, I was pain free. The next six weeks would be the only time since my accident in 1996 that I have been pain free. At that time, I was taken off of all of my CRPS medications before traveling to Germany (except for my Medtronic Pump which was in the process of being weaned). There was no follow up ketamine protocol in the US. December 26th, 2001 the burning pain returned. I was devastated. I called Dr Schwartzman and he prescribed all of the medications that I had been on before ketamine.
Two weeks after my mom and I returned home, my father died from his ALS. He had made the ultimate sacrifice by spending 2 of his last 4 weeks in a nursing home so that I could receive this groundbreaking treatment. As far as he knew, my pain was gone and I was cured.
My ketamine roomy also had a return of her CRPS pain. She had been a surgical resident at Cooper Hospital in Camden. Nancy knew the head of anesthesia, Dr Michael Goldberg at Cooper. By February of 2002, thanks to Nancy's contacts, Nancy and I were receiving ketamine in the pre-op area of Cooper. Drs Goldberg and Schwartzman had to figure out an outpatient protocol. Over the next year, they tried a variety of dosages and frequency of infusions. Of course, I needed someone to take me to and from these infusions. I lived about an hour from Cooper at the time. My uncle came to the rescue. My Uncle Jack was retired. He drove to my house (30 min) to pick me up and then drove me to Cooper. He waited 6 hours as IVs were started, infusions started, a 4 hour infusion and time to recoup. His sacrifice of his time was amazing. One day that I was not receiving treatment, he fell down the stairs at home and broke his neck. The tables were turned and I was the one to drive to Jefferson and be sure that he was well taken care of. My ketamine infusions were put on hold.
It wasn't until 2003 that Dr Schwartzman got ketamine infusions approved at Hahnemann. I did inpatient infusions there about every 6 months. He also had an outpatient ketamine program. With all of these protocols put in place, in January of 2004, I returned to Germany for a second ketamine inducted coma. This time my husband went with me. The results were not as successful the second time. I did get CRPS pain relief for about a couple of weeks, but the arthritic and orthopedic pain in my foot remained. During this coma infusion they added Fentanyl to the mixture of medications given. They felt that I needed to be on an opioid to keep the non-CRPS pain in my foot calm. It was felt that it was this other pain in my foot that was fueling my CRPS pain. We now know that opioids cause inflammation which works against the ketamine. I was living proof of this.
Fourteen years later, although ketamine is not the cure that they hoped it would be, it is still the best treatment that there is out there for CRPS. Many of us still have to pay out of pocket for this treatment. Insurance Co's do not reimburse physicians enough to cover the costs of most physicians. Medicare covers Ketamine but other insurance companies do not. I still get regular ketamine infusions. Some worry about the long term affects of ketamine. Prior to going to Germany, I had a MRI and cognitive testing. In 2010, I had these tests repeated. There was no change in the MRI or cognitive abilities. Studies in Australia go back 40 years. They use ketamine for other conditions and their study shows no long term negative effects. Studies that do show negative effects were done on people who abuse ketamine and other drugs. Prescribed dosages of ketamine have not been linked to long term negative effects. There are long term negative effects of chronic pain.
I was fortunate to get in on the ground floor of ketamine infusions for CRPS. Now, I am the Executive Director of CRPS Partners In Pain Inc. We provide financial assistance to those who qualify so that they too can get ketamine infusions as pain management for their CRPS.
Monday, May 18, 2015
CRPS Study
For the fist time in a long time, a clinical trial is taking place around the country. For more information go to www.studycrps/com for additional information
Documentary
Great news for those of us with CRPS!! Charles Mattocks is doing a documentary on CRPS. The link to his blog is:
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
Monday, October 20, 2014
I am a normal person
For the past few years, I have been a co-admin of a Facebook support group. I have this blog and I have written a book: CRPS/RSD Facts, Fiction and Feelings. I try to be accessible to the members of my support group but some how that doesn't come across. I find it very frustrating that I am viewed as inaccessible.
I can't get used to people knowing who I am when I have never met them. Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL. Crissy, one of their fantastic nurses, asked if I knew "Mary". I said that I did not. Crissy wanted to know if I would talk to her. Of course I said yes. Crissy checked with "Mary' to be sure that she was okay with it. "Mary" shouted out "I have her book!". We spoke for a while, I gave her a hug and went back to my friend. "Mary" started calling friends/family to tell them that she met me and I gave her a hug. I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc. It felt weird to me that someone would be excited to meet me.
I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease. CRPS Partners In Pain, Inc is my baby. The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments. There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research. There was no one helping the educated getting the treatment that research has found helpful. This is why we started CRPS PIP.
I don't see anything special about what I am doing. I don't think of myself as inaccessible yet that seems to be the perception of others.
I can't get used to people knowing who I am when I have never met them. Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL. Crissy, one of their fantastic nurses, asked if I knew "Mary". I said that I did not. Crissy wanted to know if I would talk to her. Of course I said yes. Crissy checked with "Mary' to be sure that she was okay with it. "Mary" shouted out "I have her book!". We spoke for a while, I gave her a hug and went back to my friend. "Mary" started calling friends/family to tell them that she met me and I gave her a hug. I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc. It felt weird to me that someone would be excited to meet me.
I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease. CRPS Partners In Pain, Inc is my baby. The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments. There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research. There was no one helping the educated getting the treatment that research has found helpful. This is why we started CRPS PIP.
I don't see anything special about what I am doing. I don't think of myself as inaccessible yet that seems to be the perception of others.
Memories
October, November and December hold a lot of memories from 2001. It was October 26th 2001 that I was put into a Ketamine Coma in Germany. At the time, we thought that this would cure CRPS. That was not the case. As of this post, ketamine coma is not available anywhere.
As a RN, I knew what the risks were of any drug induced coma: respiratory illness, infection, blood clots, etc. If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk. We now know that ketamine is needed on an ongoing basis and that it is not a cure.
I arrived back in the US on Veteran's Day. My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany. The entire time that I was awake, I was concerned that we would get a call telling us that he was gone. It did not happen. November 26 2001, my father passed thinking that my CRPS was cured.
December 14 was my father's birthday. All special events are difficult once you loose someone. This was particularly difficult as his birthday was just after his death.
As a RN, I knew what the risks were of any drug induced coma: respiratory illness, infection, blood clots, etc. If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk. We now know that ketamine is needed on an ongoing basis and that it is not a cure.
I arrived back in the US on Veteran's Day. My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany. The entire time that I was awake, I was concerned that we would get a call telling us that he was gone. It did not happen. November 26 2001, my father passed thinking that my CRPS was cured.
December 14 was my father's birthday. All special events are difficult once you loose someone. This was particularly difficult as his birthday was just after his death.
Monday, September 1, 2014
SEPTEMBER IS PAIN AWARENESS MONTH
Today, September 1, 2014 is the start of Pain Awareness Month. Most people are unaware that chronic pain is a diagnosis of it's own. Doctors blame the pain on depression; however, in most cases it is pain that causes depression.
The most common type of chronic pain is the migraine.
From www.migraines.com
Migraine is a headache with pain that can last from 4 hours to 3 days.2
The most common type of chronic pain is the migraine.
From www.migraines.com
Migraine is a headache with pain that can last from 4 hours to 3 days.2
- Pain is usually moderately to severely intense, pulsating, and often occurring on 1 side of the head
- Telltale signs of migraine may be nausea and/or vomiting, and sensitivity to light and sound
- Changes in vision or hearing, called aura, may come just before or just as the migraine begins2
- One type of migraine occurs with fewer than 15 headache days per month, some of them being migraine. This is called episodic migraine
- The second type is when headaches occur 15 or more days per month with headache lasting 4 hours or longer for at least 3 months, some being migraine. This is calledChronic Migraine2-4
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