Search This Blog

Monday, February 15, 2010

Fund Raising Efforts

I am attempting to put together a fund raising campaign in order to raise enough money in order for Allison to participate in an innovative medical procedure known as Ketamine Infusion Therapy.  This procedure is not currently FDA approved in the United States.  However, current studies have shown great results in patients undergoing this procedure who suffer from RSD (Reflex Sympathetic Dystrophy).  Allison would be receiving a continuous infusion of ketamine for five consecutive days in New York City at the Hospital for Special Surgeries or in Philadelphia, PA at Drexel University Medical Center.  Both Doctor's in the respective locations are world reknown, Dr. Daniel Richman in NY, and Dr. Robert Schwartzman in Philadelphia.  Allison has been seeing both of these doctor's in a team effort to help manage Allison's pain.  Dr. Schwartzman has been featured in People Magazine, USA Today, Good Morning America, and CNN among many others. 

Allison has reached a point in this progressive disease that the end of the line has been reached regarding treatment.  Diagnosed in 1998, Allison received numerous nerve blocks, epidural blocks, spinal injections, etc. until they no longer were effective in managing the pain.  Next we went on to some Eastern Types of Medicine including acupuncture,yoga, pilates.  This continous series of nerve blocks, medication pumps, acupuncture, and physical therapy continued until a new procedure in 2001 was utilized. A Spinal Cord Stimulator was implanted inside Allison, which utilized electrical impulses in her back that blocked the pain receptors, thus tricking the brain into believeing that the pain was gone. This lasted for several years with good success, receiving new updated and more advanced devices along the way.  However, the pain eventually became more progressive and the brain realized it was being tricked.  Needless to say, the implant was no longer effective and was removed in 2006. 

This brings us to Dr. Schwartzman, who Allison's mother saw highlighted on Good Morning America discussing his ketamine infusion therapy to help with patients diagnosed with RSD.  We called his office to and was scheduled an office visit that would take place approximately two years of placing this phone call.  Yes, Dr. Schwartzman is in high demand and the waitlist to see him is long.  Well, despite the two year wait, Allison's appointment came before we knew it and we found ourselves sitting in his office in Philadelphia to get the word that he could help Allison but that the road to recovery will be long, intense, and even more painful.  He told Allison, "You will have to be a soldier!"  Another year later, Allison was called from the waitlist of hundreds to participate in a 10 day outpatient study of the effects of ketamine to treat RSD.  For 4 hours a day for 10 consecutive days, Allison received ketamine in his office. (I spent my time wandering the streets of Philadelphia taste testing as many cheese steaks and italian hoagies I could find.)

Following this treatment, Allison was pain free for the first time in nearly 10 years.  This procedure allowed her to go back to work after being out on disability for over two years and get off of morphine.  Her infusion treatments continued over the course of the year in which she would have ketamine "boosters" for 2-3 days in a row every 3 months in order to remain stable with her pain. 

Eventually, the pain started coming back and the treatments were not lasting as long as they had in the past, just like the nerve blocks she had more than 10 years ago.  Allison then was referred to the Hospital for Special Surgeries to have a Super MRI done on her leg.  This "super" MRI is able to see actual nerves in the body so the damaged nerves can be seen.  The damaged nerve was located and now new tests and procedures commenced such as direct injections of steroid medication to numb the nerve.  This was successful although time limited.  Both doctor's have consulted and informed Allison that the next best thing to do is to have the 5 consecutive day 24 hours of ketamine infusion in order to "reprogram" her spinal cord and nervous system.  There were talks of nerve cutting, burning, and even freezing.  All of these procedures are risky and the potential hazards to create more severe pain are unknown and in essense not worth the risk.  That is a brief summary believe it or not!

Now to present day...  After being notified that Allison should go through with the 5 day ketamine treatment, her doctor informed her that this procedure would have to take place in an ICU unit of the hospital where she would be monitored every minute for the entire 5 days to make sure that her heart, liver, and kidneys remain functioning as they are supposed to.  The clincher is that this procedure is not covered with private insurance and that the cost of it would be at the expense of the patient, all out of pocket.  The rough estimate from the doctor is that is would cost between $30K-$60K.  Ouch!

This is where we reach out to you, all the family and friends we know, and all the family and friends of friends we don't know. We are looking to put together a fundraising effort prior to June  (I knew blogs and facebook were good for something).  More information about the fundraising efforts will be made shortly.  Please stay tuned as this is put together.

No comments:

Post a Comment