spinal cord stimulator and meHi guys….I promised I’d keep you up to date………here’s the latest.  Over the past three weeks I’ve had my stimulator turned off because the stimulation was getting so out of control that it had been giving me electro-stimulation all over my body, which is extremely difficult to bare in so many ways.  For those of you who are not familiar……..my stimulator is implanted on my spine along with a battery that is implanted in my stomach……it was implanted to deliver electro-stimulation to my feet for pain relief.  Since February 15th it has been delivering stimulation to my feet but as time went by the stimulation began spreading.  The shaking eventually began making my legs, arms, chest area and hands shake so I turned it off to stop the shaking.  It feels like the shaking you get when you’re sitting in one of those massage chairs only it’s in your nerves so the shaking is not detectable by human touch it can only be detected by nerve conduction study.  Today I went to the doctor and the shaking in my body was so bad and the pain from the area where the lead lines are attached to my spine so painful that my blood pressure was at 159 over 100………VERY high for me personally.  So when my Doctor (a pain management physician) saw the swelling and the blood pressure numbers he immediately called St. Judes to find a course of action.  The reaction was immediate………if the lead attached to my spine has moved (which is what they are thinking) then we have a SERIOUS problem.  I am scheduled for emergency surgery at 9am tomorrow.  They will X-ray, because you Can’t undergo MRI with this equipment implanted, to see where the lead has moved, I will then be put under anesthesia for a series of injections to help relieve the pain in the back (which was never there before this implant)……If the lead has moved to an area delicate……..I will then have a VERY dangerous spinal surgery to remove the implant.  The implication being that even if the surgery goes well……..it is quite possible that I will be hospitalized to learn to walk again……….we know that the myelin sheath (covering the nerves) is deteriorating so it is also possible that I will wind up in a wheelchair……….somewhere in this entire 18 month process of working on my spine………a mistake has been made………and it seems to be causing great concern on some of the doctors involved………the main doctor who convinced me that this was the right course of action has vanished………just quit with ONE day’s notice………so something strange is going on.  But the worst thing about all of this is that instead of improving my quality of life (pain free mobility the goal) it has made MUCH WORSE………when I awaken in the morning I’m shaking so much that I have to take several different drugs just to be able to get out of bed. Last year at this time, I was taking walks to the beach, several blocks away……….this week I didn’t leave my room, except for the bathroom and food……….and kept my feet elevated 90% of the time……….the shaking gets to you psychologically because you can’t turn it off and being out of control of your body is frightening as hell.  So now my home health care doctor is searching for psychologist to come visit me weekly.  Because it really messes with your head and my mood stabilizers are not quite helping with the depression that comes along with this craziness……….anyway……..that’s pretty much the situation for now……..sorry to be such a bummer……….I just had to get this out……….I’m scared and I’m hoping that all this lead to the place I’ve been searching for, for three years now…………A solid diagnosis so we can fight this, as yet, undefined disease……….C.I.D.P. ,most likely but still boggling the minds of the neurologists………..fingers crossed……..prayer……..and great friends getting me through this…….Thank You All……….you know who you are……..special kisses MOM…………cheers……..T xo

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