Life after a Brain Stem Stroke
For ten long years from 2000 to 2010, for me it was about learning to live "Post Stroke with associated disabilities", worst of which was a dead left leg and total loss of balance and deafness as the nerves associated with right ear was badly damaged. Was not allowed to Drive, which meant being confined at home with wife going to work and son to school.
I was drugged with a psychotic drug called Seroquel and slept from 9.00pm to 3.00pm the next day. The sleep I believe served me well during my recovery. Seroquel was prescribed by my Psychiatrist who was a fantastic physician who went out of the way to help his patients. More on him later.
So alone at home I had four companions. My Dog Rajah, my TV, my slow computer Windows XT and my bed....eating what ever food was in the fridge during the day.
TIA's
TIA stood for "Transient Ischemic Attack". Every time I turned my neck, the blood flow to the brain stem region fluctuated the body went into a shock and virtually shuddered, due to the Hypo Perfusion of the PICA (posterior interior cerebellar artery) that supplied the Brain Stem with blood.
There was burning and tingling of the right side of the face and the left side of the body. Left leg was dead as a log so I could not feel anything. Drooping right eyelids, one sided cough on the damaged right side, choking on saliva and drooling. Destined to be a vegetable for the rest of my life. This very thought made me look for an extraordinary specialist neurologist who could cure me. Well that was the Hope.
I had consulted in six months most of the neurologists in Sydney Metro and realised very few really understood my real condition and what had caused it, were conducting some basic neuro tests to decide which medicine to prescribe.
It was more like "Inky Pinky Ponky, what Can I give this donkey".
They all pretended and took out their prescription pads and Prescribed Rivotril, Lamictal, Sando Migran, Epilum, Ginko and the list went on and on. In fact it took me a while to realise that I was being used as a guinea pig to test if X,Y,Z medication helped and not through established medical knowledge.
The Good Bad and the Ugly:
We have the Good, the bad and the Ugly in every profession be it a plumber or electrician or carpenter or Engineer or Nurse or a "Doctor". Yes the Doctors were no exceptions. There were extremely Great Doctors who dedicated their lives to serving sick people, then there were mediocre ones and lastly there were totally incompetent ones too.
The worst neurologist I came across in Sydney was not happy with my Angio images and the MRI and CT Angio images I had with me. Insisted I get a new MRI of the Head and Neck done as a first step. I had my exhausted my quota of one MRI for the year already and this meant Medicare was not going to pay for it and I was going to be out of pocket by Aud $1000. When you are desperate and want to get cured you agree to everything. On hindsight I believe it is a racket to sponge sick patients.
Got the MRI done and when I picked up the images, my first appointment was with my haematologist Prof. Harry Illand ( My God Send) so he had a look at the MRI. Put it up on the screen and explained to me where the infarct was and also pointed out the blocked vertebral artery in the neck and said the radiologist had not imaged the neck properly as was requested.
Few days later saw my neurologist who reads the radiologists report and tells me there are no blocked arteries and no infarct in the brain in an authoritative way. I politely asked him "Doc can you show this on the MRI Images please ?" He had little choice so he put the images on the screen and said "See there is nothing there". I was irate as he had the image upside down and that meant he did not know how to review MRI Images. He was blindly reading the Radiologist Report and the Radiologist must have been another DoDo. Immediately I decided that he was a quack. He prescribed another medicine for the Guinea Pig and asked me to see him after three months. I paid my dues walked out and tore the prescription and never saw him again.
Though I am not a doctor, I come from a family of doctors. Three of my sisters are doctors and specialists too. A Cardiologist, another who was a gastroenterologist and Anaesthetist in London and the last a General Surgeon. My Brother in Law is a Hospital Doctor many nieces and nephews were doctors by the time I had a stroke and in Sydney I had many many doctor friends who we played cards with. Having associated with many many doctors in my life, I was fully aware that there were good bad and ugly doctors like every other profession.
In fact my father wanted a family of Doctors but I refused as I knew I would have made a good doctor but I was not keen on seeing sick people all my life as a career. I wanted to Create and build things from scratch.
I will never assume that all Doctors know what they are doing. I do my due diligence and the minute I find the doctor is incompetent I start looking for second opinions.
When you Find a Good Doctor who is knowledgeable and knows the subject and cares for you as a Patient "Cling on to them and never let them go".
My original GP was a lady who told me I was a Hypochondriac saying I was imagining my symptoms and a week later I suffered a Brain stem stroke. She did offer an apology but then I needed a better GP.
Destiny led me to Dr. Darrel Weinman, another God Send. This is an amazing story. I was at RPAH in the diabetes clinic for tests when I met another Patient. When I had finished I got into my car and was on my way home. I noticed this same gentleman at the Bus stop. He was old and must have been in his 70's. I pulled up and offered him a lift. He declined as it may be out of the way for me, but for some reason I insisted and he jumped into the car and we exchanged notes on our health conditions and on hearing my case history he said "You have to see Dr Weinman. He is in fact a neurologist from Sri Lanka but now practicing as a GP and he was in Burwood just five minutes away from your house".
Dr Weinman again was another God Send and was my GP for about 15 years. He passed away at age 85 and had worked until the last day. He suffered a massive stroke in his sleep and went into a Coma and died three days later. But he is the reason I am alive today. May his Soul Rest in Peace
I had already cheated Death seven times by age 54. The seventh attempt by the devil on 13th April 2000 was a vicious attempt by cutting off blood supply in my Right Vertebral Artery to my Brain Stem causing a Severe Brain stem stroke resulting in a Lateral Medullary Infarct with Wallenberg Syndrome, Horner's Syndrome only seen in Neurology Text Books as very few survive this kind of Ischemic Stroke.
I was feeling half dead but to neurologists I became a Celebrity as every one was amazed that I was still alive. They were openly talking about this being a Text Book Case and in the three weeks I was at Royal Prince Alfred Hospital in Sydney my Case was presented by the Registrar at a Neuro Conference. By this time my speech had recovered and it gave me an opportunity to become a superstar on stage telling what happened and how it happened and answering all questions.
in August 2001 Dr. Gilles head of Neurologist at Prince of Wales Hospital, told me "Mr.Krishnaswamy in my 16 years as head of the Stroke Unit at this hospital I have seen cases like your's only in autopsies. So You are one lucky man to have escaped certain death. So go and celebrate Life and your survival and Count your Blessings Every Day".
I was fully aware that Death Kissed me when I saw the Bright light in the MRI Machine on 13th April 2000. Had at least a dozen MRIs of the Brain since but never again saw the Bright light ever again.
When I suffered my Brain stem stroke I already had severe hypertension and sleep apnea and my Platelet Count was 890 (150-300 is Normal Range). Soon after my Haematologist Prof Harry Illand, did a bone Marrow test and confirmed that I had essential Thrombocytosis. I asked the Prof why essential ? Very Good question he chuckled. "It means Ram that we doctors don't have a bloody clue why your platelet count is high".
My Life had turned topsy turvy over night and all I was doing was seeing my GP (Family Doctor) virtually every week, having blood tests for INR (Test for Blood Thickness considering I was on two blood thinners Warfarin+ Plavix done every week ).
By 2004 I developed borderline Diabetes and started consulting an Endocrinologist and in no time I was put on insulin.
In Jan 2009 I picked up Dengue fever in India which meant I had to see a Rheumatologist who did a whole body scan and said he had never seen a scan like this ever before as every joint had fluid accumulated causing the joint pains.
It was as if the Devil decided "If I cannot kill this bloke in one go I will kill him slowly but steadily".
Then there was the constant problems with hearing affected by my stroke causing 85% loss in my right ear plus the annoying Tinnitus. Add to this blocked or running nose with post nasal drip and constant mucous in the throat. Meaning I had to Consult Ear, Nose and Throat specialists as well.
Hyperacidity and Bloating of the stomach and severe constipation meant I had to see Gasterenterologists.
By Jan 2018, I had Kidney stones, Gal Stones, Fatty Liver, enlarged Adrenal Gland, enlarged Spleen, oversized Stomach with severe bloating and constipation caused by Gasteroparesis and GORD, severe sciatica caused by prolapsed disc, Hiatus Hernia, Post Nasal Drip, Severe Sleep Apnoea, Severe Diabetes. The Only specialist I was not seeing was the Oncologist
By 2015 there were a whole lot of new symptoms. I was extremely short of breath all the time which became worse when I walked uphill. My cardiologist did ECG, ECHO and Stress Test twice every year and declared my Heart was fine, heart Valves were fine, blood flow was fine and my shortness of breath was caused by exercise induced Asthma. I had no choice but to grin and bear it.
In September 2012, I experienced severe neurological symptoms when dining at a Chinese restaurant and was rushed by ambulance to Canterbury Hospital. I assumed I was having another stroke until Dr. Penelope Spring the Consultant Neurologist checked me out and was certain my symptoms were not neurological and suspected Vit B 12 deficiency. Her diagnosis was spot on and was caused by propongued use of metformin at max dosage and this depeleted Vit B 12. One B 12 Injection and I was back on my feet and out of the hospital.
It was in August 2017 after my Neurologist Dr.Penelope Spring another God Send who had concluded after thorough examination that none of my current symptoms were neurological. I pleaded with to put aside her neurology cap and look at me as a whole person and tell me what was wrong with me and what was causing my shortness of breath and chronic fatigue.
She agreed and spent almost 90 minutes with me that evening looking at all my blood test results and scans etc etc and said I hate to say this but I think you might be suffering from MYELO FIBROSIS. What on earth is that I asked? and she said your Bone Marrow is scarred and is pumping out immature blood cells which are not able to carry adequate OXYGEN to all parts of the Body. This may be the real cause for shortness of breath and your constant fatigue.
Myelofibrosis is not classified as cancer but a precursor to Leukemia. If untreated it could become Leukemia.
My Oncologist Dr. Judit Trotman did a Bone Marrow test to confirm I did have MyeloFibrosis.
Shit happens I thought. No Choice but to accept everything Grin and Bear it.
This meant I was seeing the following medical specialists:
- Neurologist
- Haematologist
- Cardiologist
- Sleep Apnea Specialist
- Respiratory Specialist
- Endocrinologist
- Gastroenterologist
- Rheumatologist
- Ear Specialist
- Nose Specialist
- Throat Specialist
- Oncologist
AT LEAST MY HEART WAS FINE.
THANK GOD I THOUGHT
PAIN:
Brain stem stroke results in many parts of the body getting damaged affecting the associated muscles and this meant often unbearable PAIN.
Often pain Killers mask the pain and often we end up doing more damage to the already damaged muscles as the pain is masked. My sleep apnea specialist told me the opiate levels in my blood were extremely high from Oxycontine use and that I should not be driving. I said no way as that would kill me so I went cold turkey and went off Oxycontine for ever.
I exercised mind over body by convincing myself that Yesterdays pain as just a bad memory and to manage todays pain by grinning and bearing it. After pain meant he body was telling us something was not right.
Four weeks of Ayurvedic Massages in Kerala produced miraculous cure and brought back to life my useless dead left leg. Something Allopathy could not achieve.
DIABETES:
In 2004 blood tests showed slightly elevated blood sugars. Off to an Endocrinologist who straightaway put me on Metformin. The dosage increased to max 3 grams a day and then was on insulin injections. By 2009 I was on 30 units of Fast acting Novorapid 3 times a day Plus Lantus Long acting inulin 45units twice a day. My Blood sugar levels never came under control. my fasting blood sugars were around 10 daily and my weight gain was huge. I had become a Hulk weighing 110 kilogram. All my endocrinolopgist was doing was kept increasing my insulin dosage. It was time to dump this doctor and find some one better. Again Dr Penelope Spring came to my rescue and suggested I see Dr Bronwyn Crawford. Very first visit she agreed I had severe insulin resistance and had metabolic syndrome and my diabetes was Type 1.5 diabetes alos known as LADA or Latent Auto Immune Diabetes in Adults and prescribed a tablet called FORXIGA that takes the sugar in the blood out through the Kidneys and urine. For about six months there were many emergencies looking for toilets. Today in 2019 by HBa1C is under reasonable control at 7.3 and my weight is just 78 kilos. This is what good doctors are about.
