Hi guys, I know it’s bee a couple days. There has been so much going on in my life, mostly medical things. As promised, I will fill you in now. If you haven’t been following this blog I have a disease called C.I.D.P. and in the worst case scenario the illness would cause me to lose all of my peripheral abilities, hands and feet most immediately. I have had 6 non-invasive spinal surgeries in an attempt to relieve my pain so we could move on to treatment of the root of the problem which is the deterioration of my myelin sheath, protecting my nerves. We had been hopeful that the last surgery would give me relief from pain. It did NOT. At my last consult with Doctors a miracle occurred. It turns out there are forces at play here that even the Doctors do not understand. As I arrived my Doctor informed me that he had read my blog and that he was referred to it by an acquaintance. The word of the rarity of my case had spread around the surgical center where I am being treated. One the administrators had heard about my case and consulted with a few other doctors about it. Well, one thing lead to another and by the time I arrived at my meeting on Monday, they had assembled a team of Doctors that will be involved in my case. One of them is Doctor of Note. He will be instrumental in my upcoming implant of a “Spinal Cord Stimulator” which will be monitored by St. Judes hospital staff. This is significant for a few reasons. First, the cost of the surgery ($20,000) will be completely covered. Also, any new advances in technology will be automatically applied to my stimulator and will be updated for free, for the rest of my life. You don’t understand what a coup this is for me. Not only will the “Stimulator” bring me a significant reduction in pain (thank God) but will allow me to move forward with a biopsy I need to be sent to the Mayo Clinic in New York where my Myelin Sheath will tended to, but it will allow me to work with physiology team to help me with my balance issues. Physio-therapy if you will. Although I have been loathe to go through with this Major surgery my attitude was completely changed when during my Doctor visit a representative from St. Judes was there to explain the ins and outs of the surgery which she did so well that my fears have been put to rest. Not only is this piece of equipment State-of-the-Art but it is MUCH smaller than anticipated and it’s not the one I initially was led to believe would be implanted onto my spine but a much better version to be implanted by one of the best Neuro-surgeons in the country. A team will be in the O.R. at the time because of the interest in my case. There will be a representative from St. Judes present for the surgery as well, to document the occasion. You guys will not believe this thing, it’s like something right out of Star-trek. With the push of a button, on a hand- held key pad, I will be able to send electronic pain relief to any part of my lower body. Of course we are focusing the area below my knees which means attaching the electrodes to my spine a little lower than normally attached. All of that is a miracle all by itself, but that’s not all of it. There is a 4-6 week recovery period for this surgical implant with infection and effective scarring needed to hold the implant in place. So, during that time I will work (carefully of course) with therapists in physiology to help me learn to walk without a cane or walker. Wow!!..did you hear that, I can’t believe I’m saying these words. If everything goes as planned, there is a possibility that within 2-3 months I could be walking around, under my own power, without any assistance. When we first learned the exact diagnosis of my disease we ALL thought that I would eventually be in a wheelchair with no hope of ever walking again without some kind of help. Apparently the Gods had another plan in mind!! Yessssss!! (thank you God) There are so many other details I would like to impart but my Doctor was careful to help me understand that I should NOT get ahead of myself with the excitement of these new possibilities because there are several other steps with this process, but I AM excited and I just can’t help it!! Anyway, my first hurdle is tomorrow at 5pm where I have to meet a Psychologist and undergo an hour and half long evaluation to determine whether or not I can handle this whole process mentally. If I don’t pass the evaluation then my hopes are dashed, but both my Doctors and my instincts are telling me that I WILL be approved for the surgery. YAY!! What, just a few weeks ago, was a dreaded notion has turned into blessings from Gods heavens……..I can’t tell you everything else (just yet) but suffice it to say, I am beside myself with feelings of Joy I cannot convey without the use of my ability to dance around like crazy person. (LOL, fingers crossed)………I am so thankful to God for this miracle that as I sat on my roof top deck on Monday afternoon tears streamed down my face, but not once did I sob or frown……they were my first complete set of “Tears of JOY”…….Miracles are working in my life today as never before and the reason is simple..New LOVE in my life, FAITH, and GOD………my version of the Holy Trinity………My hugs-n-kisses go out to the world this day………I am on my my knees with thankful happiness……….I am Dartanion2……….and that’s the way I see it!!………..love to you all………T xx
” DO YOU BELIEVE IN MIRACLES? “
01 Wednesday Oct 2014
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Really grateful dearest Tony ! Xxxxxxxxooooooooo for Father God’s goodness and kindness of Doctors team and those offering such great care options.blessings overflowing for you my dear friend . I must have special glasses and testing for my level and degree of brain function and damage. I can not write more due to eyes and headaches..migraines and the professional and family advice to not do more now until later on. I have balance issues…yesterday I was shaking because of lack of balance test that caused an imbalance reaction so bad but hope it improves eventually. Love Always from Father God’s heart and mine to you and may all His healing presence through all this be around you and those you love and love you so much too and your other qualifying testing to go well in your favor. Now and His love in Jesus Always from my heart and spirit to yours in prayer and support….your Kate ( Alice ) can not even imagine your Mom’s joy and Cheri’s too ….not to mention all this means for your sisters and brother and sons :)xxxxxooooo
Hi Kate, wasn’t expecting to see you here……..I know you are suffering sweet Kate………I am praying for you………I am so sorry to hear about your balance issues, the migraines and I’m hoping the tests on the brain functioning prove to be well in your favor………God does have a way of making you stronger after suffering trials and tribulations……..I was just writing on that subject at the beach earlier today……..I realize now that God has had a plan ALL this time…….even when I was so depressed that I thought I’d never be able to walk again and the pain was so overwhelming that just waking up in the morning became a nightmare……..so please don’t give up dear Kate……..How many times did you relate these things to me when I was in the hospital…..many, many times……..God has an active role in your life (that is very apparent)……..I know he will love and guide you through your decisions……..please take care of yourself and come back to us soon, I pray!……we ALL love you Kate……MY Kate!!…….God Bless You sweetheart………your friend and great admirer……..tony xox
Hello beautiful angel, It’s Giggles the Poet….
I have been following your blog, but much too late on this “Spinal Column Simulator.”
Reading your blog is like I’m reading my journal that began 30 years ago, with a broken rib T4- area upper back, a misdiagnose that led to nerve damage and internal damage which led the “first” thoracic simulator being put in my body in 1991.
Tony, I’m living proof that although the simulator helped my pain for 7 yrs. When it was first implanted in 1991, I too thought it was the miracle I hoped for…….the fact that nobody monitored me, or this device…led me down a road where I felt the full destructive power of what the device can also do….and for that reason, I advise against this medical device being put in anyone’s body!
They were never monitored…as you seem to have a good list of doctor’s who are keeping tabs on you. I was never psychologically tested…before any simulator was put in my body, maybe in doing so, a red flag would have gone and stopped the medical madness and destruction….but, nobody did…and that led to me being internally electrocuted by these devices twice…paralyzing me until someone could unplug the device and stop the electrocution….taking me out of my world…my career, my life and sending me back into a bigger nightmare….finding help to remove the device…
This machine was programmed and locked in place???
I’m breaking the silence I’ve lived in for 30 years….It began with a meeting that ended my 30 year war, May 7th…which i described the first incident to the Workers Compensation Board-as they are the one’s that purchased the devices, operations that caused untold horror to my life….
May 1991 first implant – seven years later May 8th..1998 first electrocution-paralyzed me…my heart hurt, almost blacked out….would have killed me had my co-worker had not been around to unplug the device. I was running on 750 amps..24/7
And the electricity increased way passed the locked in program. And it took me out of my first new job and my life until I could find medical help….which I couldn’t so easily.
The second device implanted May 1998-weird with this one. The surgeon came in prior to being operated on…and said “what leg are we operating on today.” Groggy from sedation, I laughed it off…but I wasn’t laughing when I turned the device on a week later, only to find the surgeon had NOT POSITIONED THE WIRES IN THE RIGHT PLACE-AS PER MY FIRST OPERATION IN 1991.
The surgery was done incorrectly…I needed the wires to be repositioned a few millimeters….the surgeon refused to help, or to correct his problem which left me without the use of my legs. When I turned the device on, it sent electricity down my legs, not in my upper back….my legs wobbled and I couldn’t walk when I turned the device higher to reach my upper back.. as in first operation.
The surgeon refused to help, didn’t do an x-ray, that would later confirm the repositioning issues….I was .sent searching for medical attention again for this new problem- each malfunction-electrocution-May 8th-2008-second electrocution at second new job….co-worker Linda, unplugged the device, saving my life…
On May 7th, 2015 I had my last meeting with the Workers Compensation Board Assistant Director-they were responsible for paying $$$$ thousands of dollars for these devices and seven unnecessary surgeries….since my accident in 1985….these were never monitored….I was forgotten….until I was brought down by the electrocution seven years after new implant….
Nobody will ever know what it feels like to be part machine, part human. The voltage that went through my body, stopped the pain…I was free for seven beautiful years….I never gave it any thought….I didn’t need pain medication….and I was working again…living, loving and growing……
BUT….all of that was stolen, as was so many of my dreams since entering this unforgiving system…
On May 7th, I ended my 30 year war…and sought accountability, as well as compensation for those injuries and issues ignored and swept under the rug….they won’t bother me anymore…and retribution will be had….God will take care of the rest….I’m free….. I didn’t think I’d live to say this….
I came face to face with evil for the last time….and as I stated….my book, my journal notes, my poems are a compilation of my journey through medical madness….The gift of writing God bestowed on me, saved my sanity…and kept my spirit free while in my prison of pain…fighting for my human rights for medical care…..without judgement…
My life, mind and body will never be the same, except to say….I’m fearless, courageous and my dreams will never be taken away by these people again…..
And one day I will bring this insurance company down…and out…..for the injustice we’ve suffered….. I still have no idea what is the extent of my internal damage…I can’t find a doctor to take my case….Maybe one day I will…but until then…God won’t let anyone else harm my mind or body….my pain is my armor….
Stay strong my dear friend…..know that God works in mysterious ways…and one day we will find the answers we seek…our pain will be less…and we’ll share as well as help others on their path….
Hugs from Giggles the Poet
you are always in my prayers
Tony,
I am so happy to hear of this awesome miracle!! My prayers will continue for you, my friend. God certainly hears us when we cry out to Him. I hold on to the hope of the Lord that you will be made new in this life. You are strong and faithful, as you demonstrate in your blog which you so selflessly give to the world. Thank you for sharing!
Reblogged this on Metaphysics and the Movies according to Dartanion2 and commented:
Hi guys, for those of you who have been asking about where I am with the surgeries………here’s a repost of the initial info………I have had the first test run of the implant………and am fast approaching the final consult for the Major surgery……………Dec. 1st is the day……….and we will schedule the permanent implant as well as biopsy for Mayo Clinic in Minnesota……….the transition is more difficult than I had expected………but I’m hoping these are the final weeks of major pain……….so take a look at this post and it should answer all your questions……..and of course there will be MUCH more following…………..Shout out to BRAZIL and SPAIN……….thanx so much guys…………smiles………..tony
Hi T`
It`s the first of December tomorrow and the start of your road to recovery and I am sure from within my core that you will soon be walking without your cane or the walking frame. But take things slowly please and you will soon feel the benefits, as long as you do exactly what the team tells you to, so be a good Beasty Boy for me and we`ll soon have you back to your old self again sweety. I`m thinking of you and you are in my prayers honey.
Love G xxx
Hey Georgie!!……so nice to get this message from you……..so nervous about tomorrow……….biggest doctor appointment of my life………..thanx so much for your prayers and for not giving up on me………miss you sweetie………your Beasty boy…….tony