MY MILLENIUM GIFT
As most of you will remember, I suffered a massive Brain Stem Stroke on 13th April 2000 caused by a blocked Right Vertebral Artery in the neck. Blocked artery meant supply of blood to the Brain Stem that controls the autonomous system was cut off on the right side of the brain stem in the PICA Region..
As most of you will remember, I suffered a massive Brain Stem Stroke on 13th April 2000 caused by a blocked Right Vertebral Artery in the neck. Blocked artery meant supply of blood to the Brain Stem that controls the autonomous system was cut off on the right side of the brain stem in the PICA Region..
The Diagnosis was a Lateral Medullary Infarct, with Wallenberg's Syndrome and Horner's Syndrome etc.
The right side of my face and right hand were affected and crossed over to the left side of the torso and my left leg which was paralysed, I could not even wiggle any of my toes on my left leg which overnight became a stump or a dead log. All these syndromes meant my autonomous system was hit badly and affected my breathing, swallowing, batting of eye lids, hearing in right ear was down with severe ear ache. I was drooling and had incontinence and my right eye was drooping and half closed all the time. My vision was blurred and double and my speech was slurred and my face was burning but only on the right side as if some one had held a flame to it. It felt like some one had put my head inside a microwave oven..
The hypothalmus that controls body temperature was badly hit. While showering I felt the hot water only on the right side of my body. Temperature & pain sensation on the left torso and left leg was totally compromised. You could take a knife and cut without me feeling any pain. On warm summer nights the left leg would be freezing cold requiring special stockings.
The right side of my face and right hand were affected and crossed over to the left side of the torso and my left leg which was paralysed, I could not even wiggle any of my toes on my left leg which overnight became a stump or a dead log. All these syndromes meant my autonomous system was hit badly and affected my breathing, swallowing, batting of eye lids, hearing in right ear was down with severe ear ache. I was drooling and had incontinence and my right eye was drooping and half closed all the time. My vision was blurred and double and my speech was slurred and my face was burning but only on the right side as if some one had held a flame to it. It felt like some one had put my head inside a microwave oven..
The hypothalmus that controls body temperature was badly hit. While showering I felt the hot water only on the right side of my body. Temperature & pain sensation on the left torso and left leg was totally compromised. You could take a knife and cut without me feeling any pain. On warm summer nights the left leg would be freezing cold requiring special stockings.
At first Heparin was administered intravenously at Royal Prince Alfred Hospital emergency to thin the blood. Then I was given Warfarin ( also known as Coumadin ) to thin the blood.
INR ( International Normalisation Ratio) of 1.0 means blood of normal viscosity (for want of a better word). INR of 2.0 means the blood is half as thin as normal blood making it flow more easily. My dosage of warfarin was adjusted so the INR was around 2.0 to 2.4 and I have maintained it for 14 years with regular blood tests.
In May 2000 I consulted a haematologist as my Platelet count at the time of stroke was 890. ( 200 to 450 is the normal platelet count range). A bone marrow test was conducted and I was told I had essential Thrombocytosis. I asked why essential and the doc said that means we medicos do not have a bloody clue why the platelet count is high. For some reason the autoimmune system expects some bleeding and this is a defence mechanism getting the auto immune response ready so blood will clot fast and stop the bleed. I was prescribed Hydroxy Urea 1500mgs a day to bring platelet count to acceptable range.
My haematologist believed that my stroke was caused by an Occlusion of the Right vertebral artery meaning embolism ( a blood clot) and not Dissections as diagnosed by the Neurologist at the Hospital.
Hydroxy urea is chemotherapy to prevent platelets from joining up forming blood clots. By 2003 I developed an ulcer on the right ankle bone. The skin peeled off and the bone was exposed and the damn thing would not heel. Was admitted to Concord Hospital where it was diagnosed as a White Tail spider bit and given antibiotics and discharged. The damn thing would not heal and the nurse who came home once a week to change the dressings said she was concerned so off I went to Dermatology clinic who did a biopsy and said it was not a skin problem. A bone scan was done and I was packed off to Oncology who confirmed it was not cancer but could be diabetes related. went to the Diabetic clinic and they said I was only a borderline diabetic on tablets and this was not neuropathy..
It took a friend in the Neuro forum Neoma Barnett from USA to do some research and tell me the ulcer was caused by Hydroxy Urea. My haematologist said it was not possible as it happened one in a million cases and the medicine was safe. I happened to be the One in a Million Unlucky Jonah. I insisted I wanted to be taken off the medicine. My Doctor was not happy and he said there is only one other medicine he could prescribe but it had bad side effects. I asked what ? He said it could cause leukaemia . I said no thank you Id rather die of high platelets with no medications that take another medicine and die of leukaemia.. Stopped Hydroxy Urea that day and my platelets were hovering around 600 - 650 but I decided to take the risk.
My haematologist believed that my stroke was caused by an Occlusion of the Right vertebral artery meaning embolism ( a blood clot) and not Dissections as diagnosed by the Neurologist at the Hospital.
Hydroxy urea is chemotherapy to prevent platelets from joining up forming blood clots. By 2003 I developed an ulcer on the right ankle bone. The skin peeled off and the bone was exposed and the damn thing would not heel. Was admitted to Concord Hospital where it was diagnosed as a White Tail spider bit and given antibiotics and discharged. The damn thing would not heal and the nurse who came home once a week to change the dressings said she was concerned so off I went to Dermatology clinic who did a biopsy and said it was not a skin problem. A bone scan was done and I was packed off to Oncology who confirmed it was not cancer but could be diabetes related. went to the Diabetic clinic and they said I was only a borderline diabetic on tablets and this was not neuropathy..
It took a friend in the Neuro forum Neoma Barnett from USA to do some research and tell me the ulcer was caused by Hydroxy Urea. My haematologist said it was not possible as it happened one in a million cases and the medicine was safe. I happened to be the One in a Million Unlucky Jonah. I insisted I wanted to be taken off the medicine. My Doctor was not happy and he said there is only one other medicine he could prescribe but it had bad side effects. I asked what ? He said it could cause leukaemia . I said no thank you Id rather die of high platelets with no medications that take another medicine and die of leukaemia.. Stopped Hydroxy Urea that day and my platelets were hovering around 600 - 650 but I decided to take the risk.
Back to Stroke story: TIA's
IN August 2000 I was admitted to Prince of Wales Hospital as I was experiencing TIA's five to six times a day. Every time I turned my head to one side I could trigger a TIA or Transient Ischemic attack. I was cutting of vital blood supply to the brain stem triggering these transient attacks. A Neuro Vascular surgeon PhD from Stanford did a cerebral angiogram and said he had to perform a PICA Bypass surgery in the Brain stem immediately as the risk of a second stroke was as high as 85 to 90%.
IN August 2000 I was admitted to Prince of Wales Hospital as I was experiencing TIA's five to six times a day. Every time I turned my head to one side I could trigger a TIA or Transient Ischemic attack. I was cutting of vital blood supply to the brain stem triggering these transient attacks. A Neuro Vascular surgeon PhD from Stanford did a cerebral angiogram and said he had to perform a PICA Bypass surgery in the Brain stem immediately as the risk of a second stroke was as high as 85 to 90%.
What you see here is the dominant left vertebral artery. what you dont see here is the blocked Right vertebral artery that looks like a stump ( on left hand side of the angio_
All family and friends many of who are medicos (in fact 16 of them ) suggested I accept the surgery, except my haematologist who told me "Get out of the Hospital while you can or you may not come out of the theatre alive".
I stayed in the hospital for 13 days without making a decision and the surgeon was hell bent on not discharging me either. It was a stale mate of sorts.
I asked my nephew to do Google searches on PICA Bypass surgery, print every article he finds and bring it over to the hospital and he did.
In USA PICA Bypass surgery had been abandoned way back in 1985 as the morbidity and mortality rates were very high, as high as 9/10. There was one article on a Dr Timothy Liem Portland Oregon who was an expert in performing Vertebral artery by pass surgery in the neck. Thanks to internet I was able to ask Mithu to phone him and he was happy to look at my Angio pictures and told me vertebral artery bypass was not possible in my case as the blockage was high up inside the brain stem and not in the neck plus too much time had elapsed and he strongly adviced me not to have the proposed Pica By Pass surgery.
Any way in these 13 days in the second hospital the neuro surgeon brought another neurologist to take a look at me.
The neurologist at the Prince of Wales Hospital told me in 16 years as stroke specialist he had never seen a case like mine except in autopsies.. He decided that warfarin alone was not enough in my case as my platelet count was also very high and prescribed Plavix..
I was thick as a donkey could be, shrugged it all off and walked away and have survived 14 years and am still batting strong not out in my second innings
I have been on Warfarin and Plavix since year 2000. These two medicines saved my life. This is what I have believed all these 14 years until I figured out how wrong I was. I think they are killing me slowly
I have been on these two medicines since year 2000, knowing Warfarin was nothing but a Rat Poison and Plavix acted differently I was told. It prevented the Platelets from sticking and clotting..
The surgeon was angry as I refused surgery and I stopped seeing him. In fact two years later he was still angry and told me Mr Krishnaswamy you win I lose and there is no point you consulting me..I have nothing to offer you.
Unfortunately I am stuck in a medical system in OZ where all doctors are concerned about legal liabilities and no one was willing to take me off Plavix as it was risky. Even yesterday (11th September 2014) I saw my General Practitioner who said Sorry warfarin and Plavix for life and he cannot take me off either as it was prescribed by the specialists neurologists in a hospital. Sadly I cannot consult this neurologist as he has retired.
The question now is what should I do ?
The question now is what should I do ?
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