Hi guys!!……I have been putting off this latest installment concerning my health because things have been VERY complicated. First, I have two more surgeries coming up in the next week and I wanted to be clear about what’s happening with the stimulator because I am getting SO MUCH response to these posts that I didn’t want inaccuracies to be a part of it. My first surgery, on Saturday upcoming, is on my spine. The reason being, my stimulator is finally starting to work properly………let me make this PERFECTLY CLEAR!!……When I first got my permanent implant, my Doctor, Dr. Konstantin Slavin at University of Illinois Chicago (U.I.C.) told me that it would take about a year for my body’s physiology to adjust to the device. A few months ago I thought that it was a load of crap because the Stimulator was causing more problems than I thought necessary. It does cause unforeseen problems…….but…….in recent weeks the tremulousness in my chest and arms has vanished completely. THAT was a HUGE problem because the tremulousness was causing psychological problems ~ namely, for me ~ that I was no longer in control of my own body and that turning off the device DID NOT turn off the tremulousness. THAT, was driving me crazy. But now that it is gone (the tremulousness) I am able to recognize the help that my feet are receiving because of the neuro-stimulation provided by my spinal implant. I actually called my pain management Doctor and asked him to lower my dosage of Hydrocodone daily. That is a VERY big deal in the world of pain management ~ and for me personally ~ it gave me a new-found confidence in my stimulator. Now, that is NOT to say that things are perfect because they’re not. But, the Spinal Cord Stimulator IS doing its job. It hasn’t completely freed me up from pain but it HAS reduced the pain by what I would like to guess-timate as 30%. It’s hard to put numbers on these things because I have a VERY strange disease and the stimulator implant is also causing some previously non-existent back pain but I think we’re going to clear that up with my upcoming surgeries which will allow me to walk better and thereby bettering my quality of life. There are still a lot of “ifs” left to be dealt with but I thought it only fair to my Doctors to tell the truth here because my last two posts on the stimulator blew up my email with thousands of negative messages and I don’t want to take part in anything that diminishes the possibilities of the “intent” or progress that this device has made over the years. That being said, there IS something that needs to be conveyed. My friend Cherie, who has a progressively worsening case of peripheral neuropathy went to her Doctor complaining of foot pain , nothing as dramatic as what I’m experiencing, and without having ever met her before or EVER having asked her ANY questions ~ the Doctor recommended a Spinal Cord Stimulator. Upon hearing that I started asking the other people who have contacted me about their cases of Peripheral Neuropathy, some with pain, some without pain, and what I got back was absolutely mind-blowing. 70%of the people I spoke with, 123 people who write to me concerned about their numbness or pain, 84 people said that their Doctors had either mentioned or recommended the Stimulator. After having done research on Peripheral Neuropathy for the past 4 years I have learned that there is really no cure only “Band-Aid” type solutions for those with extreme cases. So, it stands to reason that since Peripheral Neuropathy cases, without Diabetes being the cause ,is reaching near-epidemic proportions, that Doctors are scrambling for answers. But, what is extremely bothersome is that when it was first suggested that I get a Stimulator, I was told it would cost $25,000.00, but when the I got the bill from my insurance company the total cost was $166,000.00 ~ so there is a definite incentive for doctors to push the Stimulator. Money!! I’m not going to go into any more of the gory details here but I will say this………A Spinal Cord Stimulator should be a LAST resort for anyone dealing with the pain of peripheral neuropathy and NOT for anyone who simply has numbness and uncomfortable pain. Your pain should be extreme pain because, after all, the ONLY reason for the device is PAIN RELIEF and nothing else!! Ok ~ enough said. Other than, in MY case, at this point in time, it’s working ~ and it’s working well, after a year of problematic side effects. To me, the side effects have been worth it!!……..I am Dartanion2…….and that’s the way I see it………as a patient, NOT a Doctor!!……….cheers……..T xo
SPINAL CORD STIMULATOR ~ the latest truth
21 Thursday Jan 2016
Hello brother, forgive me for my late reply…..I am so happy to hear that the machine is leveling out….When I think about it….I did have it in my body for 7 years each time…and I got my life back without using chemicals to the degree that I’ve had to since the machine, or what could be was removed in 2010….. To say that the machine was a part of me to every extent, and helped me manage my life, my career and my pain in miraculous ways….I was grateful for the device, but wasn’t grateful that I was forgotten by everyone, and not warned, or followed up with before it took me down….and as you know…electrocution is something I’ve survived two occasions….that is the consequence of not having anyone care about your care….or safety.
I am so proud of you my friend, for so many reasons, you give me more reason….I know I won’t wear that device again….but, I do hope to rebuild my body and mind this year to bring me to new heights with pain management….
Wishing you all the best with your medical care, and I pray that the future changes many things for you..
Love and hugs
Giggles the Poet 🙂