Help Tony get relief from CRPS pain
(Tony and Karen, along with their children, left to right, Jordan, Abby, Riley, Mandy, Greg and Erin)
Tony’s battle with CRPS, Small Fiber Neuropathy, Erythromelalgia and Sjogren’s Syndrome
I've created this campaign to help my brother-in-law Tony and his wife (my sister) Karen with his medical bills and to raise money to buy Tony a handcycle so that he can go cycling again. He has quite a story…..
He and my sister were married just a year and a half ago, and were planning on a wonderful life filled with camping, fishing, traveling and enjoying life together. Tony had a scheduled back surgery on Dec. 12th, 2013, less than 3 weeks after they were married for a suspected pinched nerve. Unfortunately, the moment Tony awoke from surgery, he knew something was wrong. He had a very different pain, in his left foot. He mentioned this to the doctor, and was told that it was just his nerves regenerating. It was not abnormal. Tony was not so sure.
Within weeks, the pain was getting worse, and he was having excruciating jolts of pain in his left foot. He was seeing several doctors at the Mayo Clinic, and they said there was nothing wrong. After many MRI’s, Electrocardiograms, and other tests that I have never heard of, they decided there was nothing wrong. Tony asked for a skin biopsy, because after much of his own research, he knew that was what he needed in order to diagnose what he was sure was Small Fiber Neuropathy. They denied his request, twice.
Karen did not want to give up, and together they decided to try another doctor. A neurologist at the University of Minnesota decided to look at his case, and said he would see him. The minute he saw Tony’s feet, he knew there was something wrong. He ultimately diagnosed Tony with Complex Regional Pain Syndrome, CRPS (formerly known as RSD), a chronic and debilitating pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. There are a few different causes of CRPS, and Tony's was the surgery. The pain that Tony endures from this disease ranks highest on the McGill Pain Index Chart, higher than unmedicated childbirth or amputation.
The neurologist ordered MANY additional tests, including the skin biopsy Tony had requested from Mayo, and it was determined that he does in fact also have Small Fiber Neuropathy. In the meantime, he was ALSO diagnosed with Erythromelalgia, a rare and painful skin disorder of the feet that makes his feet and legs feel like they are on fire. 
One of Tony’s blood tests came back with some results that were unusual, so the doctor requested he have a lip biopsy. This procedure landed him one more diagnosis, Sjogren’s Syndrome, which is an autoimmune disorder.
All of Tony’s diagnosis are intertwined, with each one being tied to another one somehow, and it is not known which started when, and which developed from another. The doctors think that it started with the CRPS, and that triggered the Sjogren's (which he very well could have had for years without knowing it) into high gear, which perhaps caused everything else, but they will never know for certain. It is known that each in itself is debilitating and extremely painful, but put together, Tony suffers constant excruciating pain. He has tried so many pain medications, including methadone, none of which have been successful. He has tried acupuncture, which did nothing. He has had cortisone shots and nerve blocks. He has not found relief from anything. He was recently approved for a Spinal Cord Stimulator trial, which looked promising, as many CRPS patients have found success with this, but unfortunately, this was one more devastating disappointment.
Tony is about to the end of the list of treatment options that will lessen his pain. There is a procedure available, although still experimental, that has shown positive results in CRPS patients. It is called Ketamine Infusions. This procedure is only done in specific pain management centers across the United States and can cost between $25,000-$50,000! Before exploring this, Tony wants to try another option that his pain management doctor recommended- Qutenza treatments. This is another non-typical treatment, but has proven successful in other patients.
With all of this going on, Tony has been unable to work, and although he has applied for Social Security Disability, the process is long, and after being denied once, is now in the process of appeal. He is no longer able to drive outside of the town he lives in, he uses a wheelchair when out and about, he no longer is able to do what he loves, GO FISHING, by himself, and he is no longer able to go on the long walks he has always loved so much. He has lost his sense of self.
Tony used to be a cyclist, and would ride many, many miles per day. He would LOVE to be able to ride again, but his feet and legs won’t allow it. He has been researching handcycles, as that is something that he could operate and it would get him the exercise he so badly needs, and would give him some joy. Unfortunately, handcycles are very expensive and Karen is the only one bringing in an income. It is a challenge just to keep on top of the medical bills along with their normal living expenses.
I am hoping with this campaign to raise enough money for Tony to try the Qutenza treatments and to buy handc aycle. Any money donated will be used only for medical expenses and/or a handcycle. Donations of any amount are greatly appreciated.
Donations can be made online or by check. Checks can be given to me, Karen or Tony. If you would like a mailing address, please contact me via this site.
Thank you! -Katie
When I asked Tony to tell me about his cycling days, this is what he wrote:
"There was a time that cycling was my life. Thirty miles before school many days and at least that after the last bell. I wasn't the fastest, but faster than most and that was good enough. I had a great bike back then and I still have the frame. It's an antique now and obsolete, but I have thousands of miles on that Austro-Daimler Reynolds 531 with Shimano drops. I have a few other reminders of those days packed in a box but I like to look at that, several times painted over, frame sometimes. I miss the sound of tires on new pavement and the quietness when a strong wind was pushing me from behind. I miss the friends I rode with and against. I miss the encouragement from those I passed in a time trial. I even miss being pulled over by the police because I was riding too fast down Pierce St. I know it will never be the same as it once was. My body decided to take a different route. But those times, miles and memories will always be part of me."
For more information on Tony’s conditions, please read the following links:
http://www.rsdhope.org/what-is-crps.html
http://ghr.nlm.nih.gov/condition/small-fiber-neuropathy
https://www.sjogrens.org/home/about-sjogrens-syndrome
http://www.erythromelalgia.org/WhatisEM.aspx
(Tony and his grandkids, Evan, Aria and Hunter)
(Tony and Karen on their wedding day, November 23, 2013)