Hi 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
” SPINAL CORD STIMULATOR & IT’S FAILURE ~ MORE SURGERY…”
13 Monday Jul 2015
cherie sumner said:
Hi T. You know i am a prayer warrior. I will be praying all day for you. I am here if you need me. You are so strong and God is in control. Believe that. I appreciate the detailed explanation of what is going on. I can pray very specific now as the surgeon works on those delicate Leeds. Love n hugs…xox C
I’m so sorry to hear that you are experiencing so many problems due to the stimulator…..My dear friend…one can only pray that this machine comes out…the soonest the better….because it can only get much worse….
Lucky for me, I guess…in a way, the first and second machine were forgotten about…..hmmm…can’t say that I’m sorry, when I hear of all the intrusive operations you’ve had to experience, just to clear up the calcium…..Me…having it in and forgotten about for seven years, each time, all I had to deal with was getting the machine out….which was a feat to say the least, trying to find someone who even knew about the device….and then, there was me…the first time the device was ever used…experimentally on the thoracic spine, upper back…..
Tony, I’m praying that this comes out…because the electricity running through your system can get a lot bigger than you ever realized…..hmmmm..can’t find the doctor that put it in….figures….
The problems I experience, it was only through the grace of God that I survived, and that I found you…..to warn you….I guess that is why God intervened when I went through two electrocutions….the amount of electricity that went through my body was such a force, I didn’t have the power to speak, or cry out…it paralysed me completely….the wires slipped, for the second time…. and as the voltage rose in my body, all I could do was pray. God knows, had I not been in the work place, I wouldn’t be here…and T…I don’t want this to happen to you…..
In the final operation in 2010, they couldn’t find most of the electrodes, so I only got pieces of the machine out of me….because it had been forgotten about…it had grown into my spine….now it’s a permanent part of my body..
Tony, all my prayers are going out for you to get this out….and find a better method of dealing with your pain…..there has to be better answers, I just wish I could come to you saying I FOUND IT……
If I could take your pain away, I would carry it myself….I am praying for you big time…..Stay strong….God will always provide…
Giggles the Poet
As you know, I started writing poems when my losses accumulated….and for each loss, for all the pain I had to endure, for the fight of my life, God replaced each loss with beautiful words of inspiration….I now call my book of miracles…..
I get hope from a small ray of sunshine
It’s my comfort from God through distress
I can lay with some peace for the moment
And know that I’m doing my best
I find strength when the sun shines upon me
And with strength comes a will to survive
When I glance at all that is before me
I see God’s help has kept me alive
I feel power that comes from this knowledge
And I know when I wake every morn
That God has played a big part in my journey
And he has sheltered me through every storm…
© Brenda Keough
Stay strong Angel…..I’m praying that God comes through for you 🙂
Oh my good Lord God!! you didn`t tell me T just how ill you are! you naughty beasty boy!! I`m shocked that you are suffering even worse now with that machine and I`m just so devastated to find this out sweety! Please know that my whole family and I are all praying for you sweety. I love you so very much and my heart is holding you right now my darling. I`ll be in touch by email today so we can discuss this privately. If only I could take this pain upon my shoulders, I wouldn`t think twice about doing so sweety. I love you baby and I`m praying for you. God bless. G xx