Living with Sleep Apnoea:
1987 - My wife Mithu and I joined a few friends for a week end away at a farm in Marulan (near Golburn) we had fun all day and as night fell we played cards for a while and then went to sleep. The host being a doctor was concerned about me snoring very loudly for a stretch and then going absolutely quiet. He was so concerned he came to make sure I was breathing. We let this pass not knowing it was the beginning of my nightmare.
1988 - At age 42 and chasing dreams, I could not understand why I was having a good night sleep yet feeling sleepy all day. I would fall asleep at the drop of a hat. One evening I had to take my son who had fever to the medical centre at Burwood, in Sydney. The place was packed and it was going to be a long wait. So I settled down cosily into a nice soft leather sofa and fell asleep. The doctor on duty had to come and tap me on my shoulder to wake me up. After looking after my son he asked me if I felt sleepy all the time and if I snored badly. I said yes I feel sleepy for no reason but I am not sure I snore. He chuckled and said you were snoring loudly in the waiting room making me feel embarrassed. He then said I think you suffer from sleep apnoea and it is unusual for some one slim and young like you. Mostly it happens to obese women and men with BIG necks…He suggested I go to RPAH and get a sleep study done. I reported to Dr Sullivans team that had come up with a device to treat sleep apnoea.
Dr Sullivan himself joked that the machine is nothing but a Vacuum cleaner in Reverse, providing air at positive pressure to keep the airways open. That is how it all began 24 years ago. My Nightmare
I was given about 300 pages of computer print out, that was a record of my sleep apnoea test at RPAH. Not that the squiggly graphs meant any thing. Any way I was told that I should get a Sleep Apnoea Machine and wear a CPAP Mask every time I went to sleep.
I learnt as an Engineer that CPAP was Constant Positive Air Pressure and in my case I needed 4cms of water to keep my airways open when I slept and this would also stop my snoring. Left to me I may not have done this but I wanted to make sure my snoring did not disturb my wife Mithu.
I was soon a proud owner of a Sullivan Nasal CPAP system manufactured by Rescare Ltd. and a mask with harness. The mask made me look like Elephant Man so I used to hide the machine every morning on waking up so no family member would see it, besides my wife
In 1992 - I flew to Kuwait to attend an international trade fair, one year after Gulf War-1. Flying from Sydney to Frankfurt I believe I snored so badly on the plane that every one around me moved seats. In Bahrain my nephew crept into my room with his father and they were trying to quietly record my snoring. Unfortunately for them it was the middle of the day and broad daylight me trying to get over the jet lag. I woke up and disturbed them, foiling their plan.
On our way back we had to spend the night at Frankfurt Airport to board an early morning flight back to Sydney. At about midnight after dining out with my business partner, I fell asleep at the airport lounge surrounded by 30 odd weary travellers. At 3.00am I woke up to find no one was there anywhere near me. My business partner also had moved to a different lounge and told me that I was snoring so loudly that every one, men women and children moved to a different area. How embarrassing I thought.But then I could not wear a CPAP mask at the airport lounge could I ?
1996 - Some time around 1996 I had another sleep test as I was feeling sleepy during the day. The CPAP pressure was raised to 8cms pressure and I bought a new mask called Activa made by Resmed. Was more comfortable with lesser leak but I still felt like an elephant man.
From 1989 to year 2000 even though I wore the CPAP mask religiously every time I went to sleep day or night my health was going down hill. I had developed High Blood Pressure, had put on a lot of weight, had developed a hiatus hernia and had oesophageal ulcers and I was a mess health wise. Had to stop playing sport like tennis, badminton and Indoor Cricket as I became extremely short of breath. But then I was too busy running my own business that health took a back seat for a long time.
2000 - By January 2000, I knew something was not right. I was tired for no reason and extremely short of breath and had visual disturbances. I saw an eye specialist, a neurologist and a cardiologist and no one found anything wrong. So my GP was happy to conclude that I was a hypochondriac. I was struggling to walk up one flight of stairs with my brief case and was not imagining this for sure.
On 7th April 2000, I was at the Cardiology Clinic near Royal Prince Alfred Hospital ready to undergo a Stress test. They had injected me with a Sestamibi dye and I was waiting for the test when my mouth went dry, and there was tingling in my arms and face, vision went blurred and speech was getting slurred. I reported this to the nurse suspecting this to be a reaction to the injection. The Cardiologist who was at lunch rushed back took one look at me and yelled this man is having a stroke and rushed me to the emergency in a wheel chair to the emergency at RPAH and told the triage nurse this gentleman is having a stroke and needs to be seen immediately by a neurology registrar.
The Triage nurse did not pay heed and took her own time to do the paper work and an hour later put me on a bed and did all blood tests etc; but did not call the neurology registrar on board. To this day I wonder why? as my brain stem stroke could have been aborted with a plasma injection that would have instantly dissolved the blood clot causing the problem. After about six hours in emergency I recovered and was sent home after being told I had a bad migraine attack.
Exactly one week later on 13th April 2000 I suffered a massive Brain stem stroke caused by the occlusion/dissection of my right vertebral artery. During my ambulance journey to RPAH, I thought that was the end of Solomon Grundy and was preparing to kiss my life on this planet good bye. Destiny had other plans and I pulled through and my doctors were surprised.
The Neurologist at RPAH told my wife, don't expect your husband to come back home.. Three weeks at RPAH was a nightmare alive yes but with a left leg and right hand paralysed, suffering from Wallenberg Syndrome and Horners syndrome. I was put of Warfarin and discharged and sent to Alwyn a Rehab Hospital close to Home
I arrived in an ambulance and left the hospital walking. Thanks to the two young Physiotherapists who told me I was too young to have a stroke and that I should try and recover as much as possible within the first six months. I owe my recovery to these two young God sends and my own will power. This is where I learnt to exercise Mind over Body and god my dead left foot and right hand working all over again . Also the blood thinners allowed the Right Pica region to be fed by retrograde blood flow from the left vertebral artery up the Basilar artery and down back into the Pica. This renewed and thinned blood supply to the Right Pica region allowed virtually a 95% recovery.
From Alwyn I came home with much more than I had hoped for but was still a vegetable in the true sense...plus I was experiencing multiple TIA's ( Transient Ischecmic attacks) during the day. I could trigger a TIA by simply turning my neck to one side or the other affecting blood flow to the Pica Region.
I 2001 I consulted Dr. Stoodley, a Neuro Surgeon at POW he examined me and admitted me for further MRIs and Pet scans and concluded that I needed an Angiogram as that was the gold standard to study arterial flow in the brain. Angio resluts were shocking. There was zero blood supply to the Right Pica Region. The Right vertebral artery was just a stump as seen from angio pictures below.
What followed the Angio was a battle of wits. The surgeon kept me in the Hosspital for 13 days Trying to convince me that I needed a Pica Bypass Surgery as I had an 85% chance of a second stroke that could kill me. My wife put a lot of pressure on me to trust the surgeon and go under the knife. Some how my gut feel suggested that it was a dangerous move. Many doctor friends also suggested it was a radical move and quite risky and that I should take my chances.
The surgeon brought another Neurologist head of Stroke unit who explained to me that as head of stroke unit he had not seen any patient like me with a blocked vertebral artery, except in autopsies where the victoms had suffered severe whip lashes and broken necks.. Was no consolation.
Sitting in my hospital bed I asked my nephew to do a Google search on Pica Bypass and get me print outs of all relevant articles. Glad I did my research as there was a paper that said they had abandoned all such experimental surgeries as the mortality rate was as high as 9/10...I stood my ground and got the surgeon to discharge me from POW
In 2002 after I had recovered about 90% from my stroke and I was in London visiting family, I came across adverts on Uvulo Plasty using Laser surgery. I was guaranteed that I would stop snoring and could do away with the CPAP machine…I took the plunge and even though I suffered for a fortnight being unable to swallow even my own saliva, I was glad with the out come.
Forget snoring, I could not even mimic snoring. I must confess that for about six years Sleep apnoea was the least of my worries. I had to worry about having multiple TIA’s on a daily basis, onset of diabetes, high platelets, hyperacidity, weight gain, shortness of breath, BP etc. The active kept me going. The only change was further sleep test revealed that I now required even higher pressure of 12 cms.
Around 2007 is when I struck a major problem. Leaky masks that made me feel sleepy all day every day.
This is what I looked like with my Resmed Quattro Mask in 2007
