Recently I have seen many new article in various papers and online calling CRPS a "mystery illness". I have to laugh since CRPS / RSD has been around for many years. I know that CRPS / RSD is no laughing matter as this is a diagnosis that changes your life from the onset of the diagnosis, to every pain, burning sensation you have and grueling time that you have going through life.
As a CRPS type 2, patient myself - I fully understand what Complex Regional Pain Syndrome can do to a person, their livelihood, their family, outlook on life, loss of friends, loss of social life, and spiraling out of control pain! This is not a diagnosis that is to be taken lightly.
When I was first diagnosed I was told by my Pain Management Doctor that I would be in remission within 6 months. Well, that did not happen. My journey started in 2007 when a DPM during a surgery cut into my Tibial Nerve bundle and my Lateral Plantar Nerve. Unfortunately, he left me with more damage than that, but that is what led to my CRPS.
My treatment started off with medications, local blocks, physical therapy (lots of physical therapy), and when none of that worked I was moved up to more serious meds and Lumbar Sympathetic Blocks. I went through 13 Lumbar Sympathetic Blocks (until the last one caused my Adrenal Glands to completely shut down). This put me in the hospital for close to a week to try to figure out what was going on and why I had zero output from my Adrenal Glands. Finally, after several weeks my Adrenal Glands started to function again, but that also took any further LSB off the table for me. At this point my PM Doctor increased my pain meds to keep me comfortable, and started talking to me about Spinal Cord Stimulators. I bucked that as long as I could, because I had a really bad feeling about them. He finally convinced me to do a trial... of which I did great. Then we implanted a SCS and things went terribly wrong. Every time I would charge my system my left foot (effected foot) would swell up 2-3x its normal size. No one could figure this out. Thus, they changed out the battery system. Which meant another surgery, and yes the CRPS eventually moved into my back due to the SCS and the surgeries! I went through 3 SCS, and with the last one it caused scar tissue to build up around the Dura of my Spine. If left untreated, I would have been paralyzed from the waist down. No one mentioned this possibility to me when we input the SCS! After having my Neurosurgeon research this I was told that this was a real phenomena that was happening with SCS and it was written up in some "Pain Journals".
Once the SCS was removed I was told there was nothing else that they could do for me except to keep me comfortable. To me that was unacceptable. I am not the type of person to give up and I certainly was not going to live with this debilitating pain for the rest of my life. It had already taken too much from me!
In 2011 I started flying to Frankfurt, Germany for treatment. Outside of the FDA's control, there are many different options to treat CRPS! Plus, in Germany and parts of Europe they are doing many studies on CRPS that are NOT being done in the US. I had Stem Cells implanted, utilizing my own blood! Yes, that is done in Germany. I was the first patient ever to utilize what they call Regional Hyperthermia; a treatment normally utilized on cancer patients; but they utilized it on the specific areas where my CRPS was (my left foot/ankle and back). This produced a localized radio frequency that heats up the cells. They used it in shorter durations, but higher kilojoules of energy on me. This really helped to decrease my pain levels. They also worked on increasing my immune system, they utilized Ozone via my blood, we did what they call Neuro Therapy, IPT, PK Protocol, Alpha Lipoic IVs, Myer's Cocktail IVs, Live Cell Therapy, etc... Their protocols did work to decrease my pain levels better than any treatment that I ever received here in the United States.
Unfortunately, it wasn't enough to get my pain levels down to a zero or to a point were I could live my life the way I wanted to. Thus, I continued on with my search and my dedication to find a treatment options that would help me and possibly help other CRPS patients!
I was referred over to a gentleman in Clinton, TN by more than one person. This person is Ron Eslinger! He is a Master Hypnotherapist, retired Captain in the Navy, RN, CRNA, MA, APN, BCH, CMI, FNCH. He is also the owner and founder of Healthy Visions in Clinton, Tennessee. Ron has practiced clinical hypnosis professionally since 1978 and specializes in pain management. That is an introduction for you to the person that I spent over 30 hours of treatment with in mid November, 2013.
I spoke with Ron several times prior to making the decision to fly back to TN from CA. I wanted to make sure that it would be a right move for me and that I would know what I was doing. Ron sent me information ahead of time, emailed me and he wanted to make sure that I was as ready and I did!
When I arrived in Clinton, TN - I had no idea what to think. The first day I met with Ron I was very impressed. We sat down to watch a segment of a video about how the brain functions, the different areas, how the nerves fire, it talked about the Hypothalamus, the cells, cell memory, synapses, etc... This made me feel better, and that he did not think it was just in my head. We spent time utilizing his expertise in hypnosis in pain management, bio-feedback, imagery, light/sound therapy, alpha/beta sound waves, etc... He even picked up on the fact that I was suffering from PTSD from everything that I had been through with my CRPS. None of my other doctors had picked up on that. Ron utilized the tools he had and taught me to use his tools to help myself. By the end of the 30+ hours of time with him and homework that I had done in my hotel room in the evenings... I came away with CD's of every session, the tools to keep my pain or as Ron says (my "Comfort Levels") down / or at a ZERO, the ability to put myself into hypnosis and my own light/sound therapy machine. I have to let every CRPS / RSD patient know that this was the first type of treatment that allowed me to get my pain levels down to ZERO! Plus, he, Ron, gave me the tools to keep them at a Zero.
I can not say enough about what he does, how he does it and the fact that very few CRPS patients ever look into this methodology to help their pain. At this time Ron is one of the few people that does what he does, how he does it. I am actually going back in April of 2014 to train under him to get certified, so that I too can help other CRPS patients.
If you would like more information on any treatments in Germany or better yet treatments that deal with the combination of hypnosis, imagery, bio-feedback and Ron's method's - please contact me. Or if you would prefer feel free to comment on the blog and I will get back to you.
My hope is to spread the news of new treatment options that are available for CRPS patients, so that don't have to feel that there is no hope. If I can find a way to get my pain to a zero after being told that I had one of the worse cases ever seen, then anyone can do this!
I can be reached at: rsd.crpsforum@gmail.com.
