Ok guys, I promised you a few days back that I’d keep you apprised, as to my condition. Here’s the latest. (for you new folks, my disease Is called Peripheral Neuropathy). Yesterday I underwent the second of three, Non-invasive spinal surgeries, at 11am. By the time this day had finished, we had determined exactly what my disease was called and the area directly responsible for my declining mobility, and pain issues. It was the most productive of my two year battle to fight this rare and debilitating disease. At 11am I was helped into the operating room where I was layed, face down upon an operating table that had a hole in it at one end. on that same side of the table are two arms that make the table look like a holy cross, these were to support your arms while you put your face into the hole. Beneath the hole is an oxygen mask, as I looked at it, in my minds eye, I saw myself being crucified facing backwards. (lol) The anesthesiologist then releases a chemical into the IV in your arm, and you fade into La La land as fresh oxygen fills your lungs. When I awoke, I was in the recovery room, in a bed, with absolutely no idea how I’d gotten there. It’s a strange feeling to gain a gap in your memory like that. The entire operation took 35 minutes from laying down to waking up. It consisted of 4 injections, by very long needles inserted directly through the skin and into the L4 and L5 discs in my lower spine, the objective?, to reduce the swelling causing the blockage of spinal fluids. This we had thought was the cause of the chronic pain and loss of mobility in my feet and legs. My feet are in so much pain that I cannot more than half a block without coming near to tears. To stop the pain was first on the list. 24 hours ago we had received test results showing that the disease had spread to my hands. Not good. By the time I woke up, my doctor was amazed to discover the real culprit in this two year struggle. Other Doctors had tried, none even had a clue. Turns out that my disease is accurately termed ” Chronic Inflammatory Demyelinating Polyneuropathy”. If we hadn’t gotten those test results back when we did, it probably would have remain undiscovered. The test that showed that the disease had spread to my hands also showed that the “Myelin” which encases the nerves, and is itself encased, has been eroding. Like a telephone line protecting the wires inside, it has two layers. This “inner casing” is known as the “Myelin Sheath” and is the only perfect protection for the nerves themselves. As this Sheath continues to deteriorate so will my ability to walk. So, it was really NOT good news. But, because we caught it now, we can slow the progression of the disease, hopefully keep it from disabling my hands and give me back what I yearn for….”Quality Of life”. I will never be able to run again, but I “may” be able to care for myself without any assistance. Eventually, I will lose ability to walk. But who cares, we now know that I will NOT die from this disease. It can be controlled, with some serious effort. I am so happy about my hands, I don’t know what I would have done if I could never play a Guit-box (guitar) again, or write again. Even though it was Bad” news I am relieved to finally have some answers and the abilty to attack the True problem. So, although there is probably two or three more pages of information I can share with you here, I must “jet” because, after all, I did just have surgery, and I have stayed up all night considering all of the approaching possibities, while dealing with the side affects of anesthesia. I am so excited and relieved to be free of the unknown…………I will be ready tomorrow, with some more of what I am here for…..what’s that everybody?……you got It!…….ENERGY, the singular truth of the universe……….humbly,….I am Dartanion2………..cheers
P.S. if you’re curious…..this disease is contracted by 2, in every one million people………..
I knew everything would go well for you darling, I told you it would sweety didn`t I?, and that the news would be positive, now they know for sure what they are dealing with, you will be able to get the correct treatment. It is amazing how just getting a correct name for the illness helps in your recovery and boosts your confidence in the medical teams and also their confidence in you the patient! Remember that they are just as emotionally involved in your case as you are and now they can finally start to progress with the correct treatment. It must be a huge relief for Izaac and your Mum, I`m sending this with a hug for them too. I am so happy for you sweety I knew it was going to be positive news. I was thinking about you all day and night and praying for you baby and I`ve had a good feeling about this so I wasn`t worried, I knew it would turn out well, as I said I trust my inner light. Now we can all start to look forwards and I`m going to be with you every step of that journey honey. There is a lot to be said about thinking positive thoughts, it really does help as I`m sure you already know anyway.
YOU ARE AN AMAZINGLY STRONG AND BEAUTIFUL SOUT T` AND I KNOW IN MY SOUL THAT YOU WILL STAY STRONG.
This journey that we are all on, the people who love you, because we are all in this with you together and always will be with you in it together, is important because you are actually teaching others while you are on this journey and that is very important. This will now help Cherie when she next goes to see her consultants about her problems, see you are doing amazingly well and when Cherie reads your news she will start to feel so much more positive about her condition won`t she?
I feel that is why your angels have manouvered you into doing this blog or rather they have given the idea to you and let you run with it from there, because they know how important a lesson you have to teach others and you are doing a fantastic job of it too sweety. Those angels of yours will be so very proud of you and I myself have felt a really warm feeling inside, that told me that you were going to get through this stage without any problems. Did you have any dreams when you were under the anesthetic?
I love you very much sweety
G xx
Hi G, No, and you know what? It was like I was just nowhere for 35 minutes……there was a lady next to me in the recovery room who was asking me how it felt and when I said ” I only remember darkness” she said, “don’t you worry hun, it will come back to you, it did for me, about two weeks later.” Pretty interesting huh? G, I don’t know how to respond to all of that Love you just poured out onto the page, it was so touching and warm that I am embarrassed and humbled……you have become so special to me and so positive……And, whether you know it or not yet….you have become a part of this blog……..i’ll explain later……..much more to talk about……….all of me……..tony xx
Dear Tony,
I was reading your blog so carefully, getting tears in my eyes. I was praying all day yesterday. I am relieved in so many ways that you now have very specific diagnoses of what the problems are…… Chronic Inflammatory Demyelinating Polyneuropathy. That is a mouthful to say! I wonder why, with today’s technology, doctors could not creat and fuse artificial covering walls – Myelin to protect the nerves from further corrosion. That would certainly prevent further damage if they could. It sounds very painful what you go through daily, and I think you are so brave and inspiring with your positive attitude. It is such a relief to know that this disease will not take your life. Now that I have found you, I do not want to let you go! I am always here for you. I am not as afraid to face whatever I find out about my nerve pains and numbness. I do not feel alone. You have been so kind to take me in under your ‘knightly’ wings and bring comfort, despite what I know is so debilitating for you. I am touched how you find time to even care about what I am feeling. I will continue to pray for you. I am here to talk. You are a special man. I am proud to be your friend. God bless you, and thank you. Thank you for sharing your surgery news and information on your disease….2 in every million people get this…hmmm. I guess that makes you special. 🙂 Love, Cherie
HI C, you knpw that I posted this specifically for you and Georgina….you both have given me so much just by being supportive and kind but that’s why I am so proud of both, it’s because you are both so honest,and innately kind that you don’t even recognize you’re doing most of the time…..it is a blessing to have you in my life, and I am quite sure that someday we we will meet, and on that day the circle will be complete. we will be healed, friends forever…….my word my dearest friend…..t xx
Awww, you are a dearheart. I know I am speaking for me and Georgina too when I say that you are a special soul and a blessing to know. You have such an endearing personality and fighter spirit that touches me so much. It is very easy to love you…… and I know it is special to have you as a friend. I won’t take that for granted. Every step of the way with your fight with your disease, you are NEVER alone. You are cared about and uplifted in prayer. Here is hoping for healing with our pains! 😉 Friends forever….xox Cherie
Friends forever Cherie……..friends forever……..can’t change what is……….hugs-n-smiles…………t xx