Living With CRPS - Tuesday, May 1, 2012

January, 2008 I was officially diagnosed with Chronic Regional Pain Syndrome (CRPS) by a Pain Management Doctor that is also an Associate Professor at a teaching University.  He specializes in this disease / syndrome and after he gave me the news he also told me that at this time there is no cure for this disease, so we will work together to put this disease into remission. 

At the time it was only in my left foot and ankle; I'm not sure how I can say only when that was enough to stop my life as I knew it.  As a matter of fact it came to a quick halt!  The pain that you endure this this diagnosis is hard to describe...  in the beginning it starts out with a very sharp, burning sensation.  It is a pain that is disporportionate to the injury itself.  As it progresses you have temperature changes in the affected limb / my left foot.  My left foot got to the point where the doctor couldn't even get a temperature read on it, but my right foot and ankle were totally normal.  Then my Pain Management Doctor started setting up what they call "Lumbar Sympathetic Blocks". 

I had a total of 13 Lumbar Sympathetic Blocks and they would increase the temperature in my left foot to the same temperature as my right foot, but that would only last a week or so. 

I tried 2 regional blocks and they did nothing.  Years of Physical Therapy did nothing, but make my condition and my pain worse.

Night after night  I would and sometime do - cry myself to sleep due to the continuing pain that is here 24/7.  There is no where to go, no where to hide, it is just a new part of your life.  A part of your life that you wish you never had to deal with.  A part of your life that even your family has to deal with.  This is the harsh reality of this disease.

Next I went out on my own after reading about a doctor on the East Coast that was utilizing Hyper Baric Oxygen Chamber to regulate the blood flow and oxygen levels to the affected areas, and after 20-40 sessions he was able to get CRPS patients into remission.  So, I spoke with his office and found a local clinic in Orange County that offered HBOT, had my Pain Management Doctor write a precription for it and I started treatment.  No, the insurance company wouldn't pay for these treatment, but it was worth a try.  After 32 sessions in the HBOT there was no change and no difference.  Just a lot of money gone.

Throughout all of this time I was put on a medication regiment to stop the nerve endings from firing, help with breakthrough pain, and all of the other neurological pain that goes along with this disease.

I was finally told that I was running out of options and I needed to do a trial for a Spinal Cord Stimulator.  I completed the trial and I looked like the ideal candidate.  Thus, I had a SCS implanted and had nothing but problems with it.  Then the battery was changed on it and that was supposed to fix the problem and it caused further problems.  Finally the entire SCS was explanted and a new SCS by a new manufacturer was implanted.  That was when I found out that I was running in a 5% rare category were scar tissue growes around the paddle of the SCS, it then attaches to the Dura of the Spinal Cord and if left in place it will cause paralysis.

So, with this information the last SCS was explanted on Feb, 2012.  I was out of options for treatment with my Pain Management Doctor, so I headed to Germany for Stem Cell Therapy, Electro Therapy (in the picture above), Blood Ozone Therapy, etc.  Even the treatments in Germany were more than what I expected.  There were days that I was pushed so far past my pain threshold while enduring injections directly into the areas with CRPS that I couldn't stop shaking.  Days where my pain levels surpassed the 10/10 and were closer to a 14/10.  After hours of treatment I would go back to my apartment and absolutely crash and sleep for hours on end, because I had been through so much.  When I came home a month later the CRPS in my back had subsided, and the CRPS in my foot was at 60%.

Injections into CRPS area on Left foot in Germany

I've now been home a month and due to something being left in the incision on my spine the CRPS is starting again in my back.  Yes, you read that correctly.  Just when I thought that my years of pain, suffering, torture and loosing everything was over... it is starting again.  I've had an ultrasound to confirm that indeed there is something within the incision on my back that has to be removed or I could end up with a worse case of CRPS than when I started!

Injections into incision on Back while in Germany

Please, take the time to learn more about CRPS also known as RSD (Regional Sympathetic Dystrophy).  Help me to raise the resources to start the appropriate research that is necessary in the US to start to treat this disease. 

Feel free to contact me via email or snail mail.  If  you would like to send donations I will promise you that they will go towards the research and FDA approval of treatments that are already working in Germany that should be available for the 1.2 million Americans that suffer with this disease on a daily basis.

I can be reached at:  T. Patterson
                                  14242 Raintree Rd.
                                  Tustin, CA 92780

Don't forget to forward or share my blog with others to keep my story going.  Keep your eyes open for a matching twitter account soon!  The more people that are aware of CRPS and some of the awful pain and suffering that it puts children and adults through... the sooner we can get the recognition and the funding to find a cure for this awful disease.