http://www.novanewsnow.com/article-2650 ... -head.htmlAll in my head?
by Wendy Elliott/The Advertiser
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Article online since October 28th 2008, 13:53
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James Skinner of Weston has an amazing amount of documentation on his chronic health problem, but is still waiting for surgery. W.Elliott View all pictures All in my head?
BY WENDY ELLIOTT
Kings County Register
A Weston man has taken a miserable health condition and used his computer expertise to aid sleep apnea sufferers worldwide.
Computer programmer James Skinner was living in Ottawa when, over a period of years, he felt increasingly ill.
“In April of 2005, things got so bad that I could no longer work.”
The Acadia University computer science grad had been working for Nortel for 10 years. He had a huge list of symptoms: fatique, headaches, night sweats, memory problems and difficulty thinking.
Doctors would not take his complaints seriously, despite many visits and a few trips to emergency.
“They became convinced it was all in my head and didn’t even try to diagnose the problem.”
In June of the following year, Skinner thinks he had a tiny stroke. A month later, he was diagnosed with severe sleep disordered breathing (sleep apnea).
“I was having breathing problems 55 times an hour,” he says in amazement, “which explained all the symptoms I was having.
“I started using continuous positive airway pressure (CPAP) therapy to keep my airway open when I slept and my life got dramatically better. That should have been the end of my story.”
In November of 2006, Skinner developed a terrible nasal congestion.
“Things quickly got very bad, as I couldn’t breathe and I got very ill and had some more neurological events. I tried desperately for months to get emergency help.”
He was prescribed all kinds of drugs, including antifungal medications and antibiotics.
By July of 2007, he was so sick he had to move back to Nova Scotia so family members could help care for him.
“Moving back was a huge setback healthcare-wise. I changed family physicians three times in the Valley trying to get a doctor that would help me, but none of them would even believe that I had sleep apnea.”
Documentation from three Ontario sleep tests had no credibility.
“It took me a number of months to even get to see a specialist,” he says, “and, when I did, she said there was no way I had sleep apnea - although she did no tests.”
This physician refused to take him on as a patient, he believes, because he doesn’t fit an outdated profile for sleep apnea. Shortly after, Skinner connected with a specialist locally willing to try and help.
“After testing me himself, he made a referral to a second specialist in Halifax who finally X-rayed my neck and found that I had a narrowing at the base of my tongue.”
The recommendation: a serious jaw relocation surgery, over a year from the initial apnea diagnoses. Skinner still couldn’t find a doctor dedicated to resolving his on-going congestion problems.
“Basically, I was suffocating each night. I was faced each night with the decision of using my CPAP and having swelling slowly suffocate me, or not to use CPAP and risk more neurological events from a blocked airway. Not an easy choice, and I suffered incredibly.”
Skinner was only able to sleep a few hours at a time, until the swelling got so bad he had to get up. Eventually, he had to sleep elevated just to keep his airway open at all. Out of desperation, he went to Canadian Tire and bought some flexible tubing to insert into the apnea device he was wearing in his mouth so he could get more air.
By March of this year, Skinner was fed up. He flew to New York City to see an allergist.
“He could easily see the congestion that so many Canadian doctors denied even existed. Then, he recommended some medication and suggested some nasal procedures to get done back in Nova Scotia.”
It was only in September Skinner finally got to see a specialist in Dartmouth who agreed he needed nasal surgery.
Now he is waiting for two surgeries: one minor, scheduled for next July and one major, which he has been waiting for since November 2007. That’s not scheduled yet.
“The wait times boggle my mind. It’s hard to understand how breathing is not considered more urgent,” he says. “And, imagine when no doctor will believe you.”
Having the major operation in the United States would cost him $75,000.
“The worst part of all this is the damage done from waiting and having doctors that wouldn’t help me because they didn’t believe.”
He has mostly recovered from the initial mini-strokes but, now, the 40-year-old says the later ones seem to have permanently affected his right side.
“Basically, my right side feels slightly heavy, doesn’t respond quite right and goes numb easily. It was hard to live though that experience knowing you were being damaged each night and not being able to get help to stop it.”
He was so obsessed with sleep apnea and feeling better through the past four years, he learned more and more; eventually creating his own software, able to track treatment trends. He has now posted it free online.
“There are now hundreds of apnea sufferers worldwide using my software on a daily basis.”
On sleep apnea
Sleep apnea is a sleep disorder characterized by pauses in breathing during sleep.
The first reports in medical literature date from 1965; however, the clinical picture of this condition has long been recognized as a character trait.
• The most common treatment is the use of a CPAP device, which “splints” the patient's airway open during sleep by means of a flow of pressurized air into the throat.
• There is another device that can assist with both inhaling and exhaling, used in more severe cases.
• Dentists specializing in sleep disorders can also prescribe oral appliance therapy.
• For some, surgical treatment to anatomically alter the airway is an option.
Go to the link and have a look at the handsome guy.
