spinal cord stimulator 166,000.00 dollar conveyer beltHey guys, what I’m about to convey to you is not an accusation of any kind………I just need to talk about this and I seem to do best when I write……….for those of you who haven’t been following this blog ~ I sometimes post updates concerning my undiagnosed condition of Polyneuropathy to the extreme……..I apologize to those of  you have come for a Metaphysical needle in the arm……..today is a “kiss my penis” day to the world of medicine.  I have been struggling with the fact that my nerve endings are dying for the past four-plus years.  Some days my feet throb so badly that I have to take meds when I’m awakened by them so that I can find the ability to walk to the bathroom without facing a great deal of pain ~ but that’s not how it began.  It began with what I kept thinking was my feet falling asleep.  Since then I have had 13 surgeries and a final decision to have the implant on my spine because living with pain sucks so bad that it steals your entire life away.  I want my life back.  My doctor tells me we can do this $25,000 dollar operation to implant a device on my spine that will send electro-stimulation to my feet and reduce my pain greatly thereby giving me some semblance of quality of life ~ because I spend 80% of my time in my room with my feet elevated to help the pain in my feet.  Well, what most of you don’t know is that the operation actually was $166,000 dollars and the doctor who set me on this course was fired under secretive circumstances and the stimulator is causing more pain and difficulties than when I first came to their offices…Why would he lie to me about that if he wasn’t up to his ass in something illegal.  Since I’ve had the stimulator implanted……..no one has followed up to see how it’s working or anything………..fortunately I have an amazing team of doctors at Northwestern Memorial Hospital who are helping greatly.  But aside from the fact that my feet are completely numb and the numbness moving up my leg, where constant pain is generated from the bottoms of my feet and up into my legs……..like open wounds throbbing and little needles and lightning strikes hitting the bottoms of my feet and shooting upward………I now have extreme back pain caused by cartilage forming around the lead lines that are connected to my spine ~ right where the L3, L4, and L5 discs are located on the spine.  Moments where my back freezes me in place with gripping lower back pain and I have to grab onto something without falling.  The battery has been implanted in my stomach and sometimes sleeping on my right side is impossible because the battery gets hot and feels out of place……but the worst part of this is that the electro-stimulation that is aimed at my feet now has my entire body shaking like one of those vibrating lazy boy chairs……..it doesn’t stop, the tremulousness is in my chest, arms, hands, stomach, legs and feet……..I’m shaking ALL of the time……….and you can’t turn it off …….like I was told in the beginning.  If you turn the stimulator completely off it takes 4 or 5 days for any kind of relief but those 4 or 5 days are another little nightmare alone.  If you ask a private practicing neurologist these days about the numbness and sharp pain from your feet their first response is “Have you thought of a Spinal Cord Simulator”…………I have talked several people about this…….my doctors are now in the midst of having this thing removed………interesting how they forget to tell you it’s 10 times my more dangerous to have it removed………..so here’s where I am right now………….I take seventeen pills per day, I rarely leave my apartment………I sometimes don’t sleep for three days at a time……..I forget to eat (have to remind myself with marijuana)………I have so much pain in my feet that I cry alone and pray that I might understand………the doctor’s were only trying to help me and make a buck for themselves on the side…….I’m cool with all of that………..what really sucks is that my entire body is shaking on the inside , 24-7, no getting away from it, it’s driving me nuts……..My new doctors have recognized that I have been cut off from the world for 4 years and that depression is not helping and so they want me in psycho-therapy where they can give me more pills and to help me deal with the fact that I am no longer in control of my own body……….when I touch electric objects now they react in weird ways……..the electro-stimulation in my body is in charge now………my physiology is changing…….and my ability to accept the fact that my nerve endings are dying and NO ONE has any clue why……..my teeth are falling out  ~ no nerve ending, no teeth…………the simple fact that I have no diagnosis whatsoever is the worst………must have done something pretty bad in a past life or something………last week my home healthcare doctor said he thinks I should get a wheelchair………I told him there was no way in hell I was giving up………and a wheelchair is the symbol for pity in this country………..you’ll NEVER get me in one of those things………anyway I’m rambling through anger here……and trust me….I’ve left a LOT of crazy ass stuff out of this post………I just wanted to say that these guyd are going around implanting things and saying it will help……..but it seems to me it’s just a big conveyer belt where they are trying to sell as many as they can………with no regard for how their patient is doing after they have implanted it.   One thing, when I first got this implant i did get two visits from the representatives at St Jude’s to see how i was doing since they were part of the reason i decided to make this mistake……….i just want my life back and no one seems to understand what’s happening to me……….crazy right?…….well i’ll do some happier stuff tomorrow…………later………..T xo