Having any disease can be frustrating. With my Complex Regional Pain Syndrome (CRPS), I have exhausted all of the treatments that are available in Portland, Oregon.
The only thing that I’ve not tried is a spinal cord stimulator (SCS). I’ve been apprehensive about trying that one. My doctors have been pushing it a ton, but from what I’ve read, it doesn’t have a great success rate. Most people that have an SCS device still have to take strong narcotics to make it through the day.
The risk of CRPS spreading up my back is also very high, which would be awful. Right now, the only position that I can be comfortable in is sitting up in bed. It would be awful if I lost that one comfort.
For those that don’t know what an SCS device is, let me describe it. Basically, there are two electrodes that pass up the spinal cord to the thoracic spine. The electrodes send an electric current down the spinal cord to block the peripheral nerve sensors. You don’t feel pain, but instead feel a messaging/humming throughout the affected area of my body.
With the odds of it failing, spreading my CRPS (which is already spreading a ton), infecting my spinal chord, and having a battery pack installed in my side… I just don’t think it’s something I want to try.
Part of the reason that I’m reluctant is that I want to have another baby. There have not been many studies on women with SCS devices that want to get pregnant, from what I have seen.
When I asked the SCS representative about the questions and concerns I have, he told me to speak to my doctor about them. It was not reassuring hearing that, since my doctor had told me to ask the representative my questions.
I like having as much information as I can get before I enter a major procedure and, right now, I don’t feel like they have answered my questions.
So, since there are no other treatments in Portland for me, we picked up yesterday and moved up to Seattle, Washington.
It’s so nice to get a change of pace. Being outside the four walls of my apartment is wonderful enough, but add the beautiful view and the big windows in my new place… and I feel like I’m in heaven.
The goal to moving up here is that I get into Washington Rehabilitation Institute, which has an 8-16 week program for patients specifically with CRPS.
How this program works is that they put an epidural catheter in my back for several weeks. This allows me to work out and use my legs without being in horrible pain. The goal is not only to reset my brain into thinking that my affected area doesn’t feel pain, but also allow me to detox from my pain medications. During the time, I’ll be working out and taking classes eight hours a day, six days a week. It is intense, but I welcome the challenge.
Part of me still has hope that I’ll get back to firefighting or working as an EMT, but the logical part of me knows there’s no way that will happen. It’s time to find a new dream.
I guess, in a way, writing has become my new dream. It was something that I never had the time for before the onset of my CRPS. Had my CRPS not happen, I would still be working 55+ hours a week, never see my family, and never would have time to write. Now that’s almost all I do. I love it. It has become a form of therapy for me, and a way to coping with all of the life changes.
I’ll never “get over” the life that I lost, but now it’s time to start thinking ahead to the new life I have.
Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.