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My name is Elana Hellring. I’m 33 years old. I am married nearly eight years and have a beautiful little boy named Jesse who is almost 2 ½ years old. I mention my family first because Lance (my husband) and Jesse are the only things that keep me going and fighting especially on those “bad days” that only another RSD sufferer can understand. I am scared, nervous, anxious and every other confusing emotion with respect to the ketamine coma trial. However, I know this is my best opportunity at recapturing my life. So as I embark on this new phase of my RSD saga, I would like to share with you the story that brought me to this point in my life.
On the morning of February 4, 2008, I was a successful senior sales representative for a major pharmaceutical company. I was five days away from traveling
While jumping rope, I landed awkwardly and developed two stress fractures on my right foot. While I knew I had done something to my foot, it was such a non-issue in my mind that I completed my full workout.
The next day I went to the podiatrist who gave me a walking boot and told me I would be healed in 3-4 weeks. This has been the longest 3-4 week healing period in history. Since the day I got the walking boot I have not put a regular shoe on my right foot. I either wear a walking boot when I am out in public or a surgical shoe when I am in my house.
After a month in the walking boot, I went back to the podiatrist and told him the foot is hurting more not less. Fortunately for me my podiatrist was a friend of the family and listened to me even though the x-ray showed the bones had healed. It turned out the podiatrist had seen a few cases of RSD over the years and although he did not tell me what he was thinking he consulted a neurologist and radiologist who all agreed that based on the symptoms I was describing; they felt it was RSD. On March 13, 2008 I was told I had developed RSD.
The next day Lance and I met with the head of pain management at Mt. Sinai Medical Center on Miami Beach. He explained to us what RSD is and how it is treated. He told us he was going to perform a sympathetic nerve block and that would “blow up” the faulty nerve that is sending the pain signals from my brain to my foot. The following Tuesday I had the first of a series of five nerve blocks in a five-week period. I got absolutely zero benefit from these nerve blocks.
During this same period of time we learned about Dr. Robert Schwartzman at Drexel University in Philadelphia. We went to meet Dr. Schwartzman on May 21, 2008 in Philadelphia. During that consultation he explained his method of low-dose ketamine infusions as the most effective way to combat RSD. He also explained the ketamine coma option but we felt that since I was young, healthy and it had only been a few months since the onset of the RSD, I should have a good chance of success with the low-dose ketamine method. After spending a good deal of the summer getting the required cardiac and psychiatric clearances, I began the first of what would eventually be fifteen infusion sessions on September 15, 2008.
After the last of these infusions, on October 24, 2008, Lance had a conversation with Dr. Schwartzman at which point he advised my husband that we should strongly consider the ketamine coma trial because I was not receiving any benefit from the low-dose treatments. He suggested that we schedule an appointment with Dr. Anthony Kirkpatrick in Tampa to discuss the on-going trial in Monterrey, Mexico. On November 10, 2008 Lance and I drove to Tampa to meet with Dr. Kirkpatrick. During that visit, Dr. Kirkpatrick agreed that Elana was a candidate for the ketamine coma trial and even told us that we could go the next month to do the coma trial if we wanted. At the same time, he cautioned that I may not be ready emotionally and that I needed to be 100% committed to doing the trial before I make the decision to go to Monterrey. Lance and I were in a state of confused shock after the visit to Dr. Kirkpatrick. We did not speak one word about the coma trial for the entire five-hour trip back to Miami Beach. The next day, after we had a chance to absorb everything Dr. Kirkpatrick had told us, we determined that I was not mentally ready for the coma trial and we decided to suspend all ketamine coma talk until after the new year.
Before, we began Dr. Schwartzman’s low-dose ketamine treatment in September of 2008, we had decided to switch doctors in Miami because we were not convinced that the doctor we were seeing was at the forefront of RSD research and treatment. We felt that we needed to be in a university setting where there is more research and understanding about relatively rare and poorly understood disorders like RSD. We were incredibly fortunate to come into the caring hands of Dr. Sal Abdi, the chief of pain management at the University of Miami School of Medicine. Dr. Abdi was familiar with the collected work of Dr. Schwartzman and Dr. Kirkpatrick and had started to use ketamine infusions on some of his RSD patients as well. He was very supportive of Dr. Schwartzman’s ketamine treatments and has and continues to be a critical part of my support team. On top of being a very talented doctor, with all the credentials a patient could ever hope for, he is, more importantly to me, an extremely kind and considerate health professional who gone above and beyond what could possibly be expected in terms of follow up and support for me and Lance.
When we visited Dr. Kirkpatrick in November of 2008, I shared with him that my left shoulder was in a lot of pain, it was not even close to the crippling pain of my right foot but I suspected the RSD had spread to my shoulder. Dr. Kirkpatrick suggested that I have a stellate ganglion block in my neck to help alleviate the pain in my shoulder. We immediately scheduled the first of what would eventually be almost a dozen stellate blocks with Dr. Abdi. This shoulder block was the first treatment or procedure, since my ordeal had begun that actually provided some relief. I continue to get the blocks about once a month from Dr. Abdi.
As the New Year came and January passed into February and then into March and April, I was in a state of “paralysis from analysis”. I did not know what to do, I still had not accepted in my mind that I was truly a candidate for the ketamine coma study and I knew that all of the other treatments we had tried had provided little or no benefit at all. I asked my husband to call Dr. Kirkpatrick to inquire about his three-day ketamine infusion treatment. I knew that Dr. Kirkpatrick used a higher dosage than Dr. Schwartzman and I thought that maybe that would be the difference for me to extract some relief from the ketamine.
We scheduled a three-day treatment for June 16, 17 & 18, 2009. As any of you who have gone through Dr. Kirkpatrick’s treatment, it is very difficult on the mind and body. It is also difficult for the caregiver who is in the room with you watching you suffer. While I did not gain much benefit from Dr. Kirkpatrick’s three-day treatment, there were some minor changes in how the pain felt and where the pain manifested itself on my foot. For a few weeks the burning at times felt more like a crème brule torch instead of a welder’s torch. I was even able to go on a family vacation to Rhode Island and Cape Cod to see my family and close friends. I actually was able to travel and spend two days of mild activities before I was unable to get out of bed for 24 hours. I could not remember the last time I had gone that long without crashing in bed delirious from the pain. So I could not say Dr. Kirkpatrick’s three-day infusion was a total bust as I was able to identify some changes and I don’t think it would have been possible to travel without having done it.
As I entered August and September, it was obvious I was regressing again. I was still not able to sleep, or eat solid foods. In addition the swelling was increasing along with the weight gain. I have not had more than an hour or two of consecutive sleep during the night in more than 18 months. What is more, the swelling has gotten so bad that on top of the 30-40 pounds that I have gained since this all started; I am no longer able to eat solid foods. After two bites, it feels like someone is punching me in the stomach. My diet now consists entirely of yogurt, frozen yogurt, popsicles and smoothies, along with protein powder. I spend almost all of time in my bed, on my couch or in my bathroom unable to urinate because of the urinary retention that is probably a symptom of the swelling. Also, I am unable to read the piles of books next to my bed, due to the double vision and pain behind my eye that occurs after about 15 minutes of reading. We did visit a specialist at Bascom-Palmer Eye Institute at the University of Miami who concluded that my eyes were fine and my vision problems were related to my RSD.
We agreed with Dr. Kirkpatrick that it made sense to attempt another three-day ketamine infusion to see if we could get some temporary relief similar to what I had received earlier in the year. However, we also decided that we would begin the process of entering the ketamine coma study in Monterrey. On October 20, 2009, I started my second three-day ketamine infusion in Tampa and on November 23, 2009 I returned to Tampa to film my pre-coma trial video with Dr. Kirkpatrick. At the time of this writing, I don’t know exactly when I will be traveling to Monterrey to begin the coma trial but I am hopeful it will be sometime in early to mid-January of 2010.
As I begin this new journey I want to extend the most heartfelt thanks to Dr. Kirkpatrick’s tireless staff: Katie, Sanela, Nicole, Mary and Maureen. I have been in hundred’s of doctors office’s during my career as a pharmaceutical representative and of course as a patient these last 22 months. I can say without hesitation, this is the most attentive, caring and sympathetic group of health care professionals that I have ever witnessed. For those of you who have been to the office you know what I am talking about and for those of you considering Dr. Kirkpatrick’s services you will quickly learn what I mean.
When someone asks me what is it like to suffer from RSD, I explain there are only two types of days. There are bad days and there are worse days. I want more than anything to add a few good days back into my life. I want to be able to pick up my child in my arms, walk him into his classroom and pick him up from school. I want to do the mundane things again like going to the grocery store or taking my dog for a walk. I would like not to have make plans with friends or family and warn them in advance that there is an 80% chance that I will have to cancel the day of because I won’t be able to get out of bed. I’m ready for what lies ahead in Mexico. I hope I can join the list of success stories.
Miami Beach, Florida USA
December 4, 2009
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The International Research Foundation for RSD / CRPS is a