BionicKris's Page
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- More about me (my health interests and reasons for joining WEGO Health)
- This one is pretty long., but thanks in advance for your patience....
I am a Registered Dental Hygienist and I have an implanted Spinal Cord Stimulator (SCS) unit for the management of a chronic pain disorder. The
nerve disorder I have is called Reflex Sympathetic Dystrophy (RSD),which is now commonly referred to as Complex Regional Pain Syndrome (CRPS). My main symptom is a constant, intense burning pain throughout the right side of my body. There is no cure for the disorder, only pain management. I am under the care of a Pain Management specialist, but I am aware of many patients who are being treated by their primary physicians who try to treat these complex disorders without referral to a specialist, with less success.
The Spinal Cord Stimulator uses electrodes surgically placed near/on the spinal cord in specific areas depending on the location of the pain. If you have ever used a TENS unit you will recognize the sensation, which resembles "pins-and-needles" or tingling sensation. You can adjust the intensity and size of the stimulated area. The SCS is basically a fully implanted TENS unit without the external pads and wires. It helps manage the intensity of my pain by interfering with the pain signals going to the brain, replacing the unpleasant burning sensation with the tingling sensation instead. One thing the SCS won't eliminate is the need for meds, as many people are led to believe. Medications are used in conjunction with the SCS to help treat the source/condition causing the pain.
I have always been extremely physically active, participating in a wide variety of sports. In high school I played 4 different varsity sports and then 4 years of collegiate tennis- it was the sport that fit best with my busy clinical schedule. When I played sports I got VERY physical, diving and doing whatever was needed to make the play, but when you're used to playing that way it is very hard to back off.
Following the SCS implantation I didn't like the thought of having to stop my activities but I now had to rein in that reflex of throwing my body around. I found another activity that would be safe for the SCS-and myself- through a casual chat with my primary care physician.
My primary care physician is a Karate black belt who trains at a local Do-Jang and he suggested that I meet the owner, a Master-level instructor, to discuss my situation and any physical limitations. I was given the freedom to stop/back off whenever I needed to so as not to damage my SCS or aggravate my RSD. After a careful progression of finding my limits I managed to train 4-5 nights a week. I felt great and was able to do MUCH more than I had envisioned, while getting a great overall workout. I would go as far to say that I was in the best shape of my life while training in karate.
Even while wearing the SCS I had at the time (with its external antenna cable worn beneath my "dobok") I started entering tournaments participating in forms competition and point-sparring (fighting). I won the NY State Championship in sparring and forms competition for my belt level- all while "hooked up". There are many mental as well as physical benefits from being able to train and compete as hard as I did, even with my implanted SCS unit.
I would highly recommend getting involved in a physical activity- even with a chronic medical condition (or implant also, in my case) as long as you take necessary precautions and carefully "listen" to what your body is telling you. There are many benefits from participating in activities, from the physical benefits of exercise to the social interactions during the activity. A common "side effect" of chronic disease is a decrease in social interaction. Even a daily stroll around the block will get you out among others and help to keep you from becoming closed off from others. The benefits far outweigh the risks as long as they are done carefully.
Another hobby of mine that helps me "get away" from pain is riding motorcycles. I started riding dirtbikes at the age of 9. Currently I'm riding a "classic" road bike; an incredibly maintained 1981 Suzuki GS850L with 9700 miles on it that I came across 6 years ago by pure luck. Many times I ride with a group of classic bike owners who organize a big ride each July. The members also meet for weekly dinners year-round. I enjoy participating in group rides for various charities where I get to meet fellow riders while helping others. Weather permitting I take my bike to my pain management appointments then enjoy a scenic, leisurely ride home.
I have had people have tell me that I'm crazy for riding and it will only aggravate my symptoms- and certain types of bikes would- but I was lucky to come across my Suzuki. I couldn't have found a better bike to suit my needs for comfort and smoothness as well as its looks and power (and fun!). Even after a 220-mile round-trip ride to my appointment and back I have NO aggravation of my symptoms immediately after or the next day.
When I ride I don't have unneeded distractions; no music, no phone. You need to constantly be on the alert and scanning the mirrors, but I enjoy just being able to get out, clear my head and enjoy the ride, which can help you feel better than any medications.
Through my experience I have found that keeping a positive attitude makes a big difference, physically as well as mentally, for a wide range of medical problems. It definitely isn't easy at times but it has helped me with my RSD/CRPS since I was first diagnosed in 1995.
In addition to the Pain group have joined the Dystonia group, even though I don't suffer from the disease. I have a friend who is active in dystonia awareness and I'm very interested in learning more about it. At a previous job I worked at a PT clinic and I met a patient who developed dystonia in his left arm/shoulder following a car accident. Through my experience in helping him with his therapy I learned a lot about Dystonia, including the use of Botox shots to break down overdeveloped muscles in his left shoulder which were pulling his head and neck over to his left side.
Years later I learned of Beka's story and I learned that we both see the same Neurosurgeon. After I came across the photo essay of her DBS experience I realized her illness was the same condition as the patient I helped treat at PT.
When Beka and I chatted about the spinal cord stimulator she had a lot of questions regarding how it works. I know there are others who may be candidates for an SCS to relieve their pain, so I would be willing to answer any questions members may have about the unit and how it works, and offer help & support in whatever way I can.
I'll "meet" some of you through your posts on the message board.
Stay positive, and the best of luck to you all!
© 2009 Created by Marie
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Thanks,
Becky
beka , another bionic woman !
You will get many questions. I still dont really know how it works.
beka
xoxoxo