My Update: Nasal Surgery and Empty Nose Syndrome
Posted: Thu Jul 28, 2011 5:08 pm
Hello Everyone, Most of you probably won't remember me but I used to be a regular here a number of years back. For those of you who do remember me I thought I would post a update given developments in my situation and the fact that a few of you have recently contact me due to an article about my situation in a local paper. (Thank you for that)
After years of problems sleeping I was diagnosed with severe sleep apnea in the summer of 2006. This explained years of symptoms that often had been dismissed or misdiagnosed by doctors. Initially CPAP was a miracle cure dispute not being a very pleasant treatment. However over the next new months I developed increasing nasal congestion problems which as many of you know make CPAP use very hard.
It got so bad that I was basically suffocating and suffered several stroke like events during 2006/2007. I tried desperately to get medial help here in Canada but the system is badly broken and I couldn't seem to get anyone to help. At my wits end I eventually went to the US and had nasal surgery there twice by a fabulous doctor in Cleveland named Dr Howard Levine. (Someone on this board recommended him to me so I thank you for that) These surgeries helped quite a bit but did not cure the problem.
Up until the surgeries I could barely function, I was in constant agony most of the time from the combined suffocating and sleep apnea. After the surgeries I had headaches most mornings but they usually (but not always) wore off sometime during the day. I continued to try and get help in Canada but got no where.
I knew at some point I was probably going to have to have some type of additional surgery to deal with my narrow airway and I also really needed to find out what was wrong with my nose. However I kind of gave up after the surgeries in 2009 and since I could function somewhat. I chose to coupe by living though the daily morning agony and then going about life doing as much as I could to ignore my nightly problem. I got really involved in the community and developed a great group of friends after moving from Ontario to Nova Scotia.
However I still needed find a solution to the nasal problem and the narrow airway. In early 2011 I had had enough and wrote a letter to a local an ENT that I had seen asking him for a skin lined tracheostomy as it was clear I would never get the Canadian system to investigate more and there just didn't seem to be the expertise here. I knew there was help in the US but by this time I had used up all my savings just waiting around in Canada.
On March 3rd I saw the ENT and a terrible thing happened. Right there in the office without really me giving my consent he performed a third turbinate reduction. I was very unsure about it given that I had had it done twice in the past but he assured me it was safe. He was very aggressive and during the procedure burned a hole right though the musosa in my left nostril. In the end the procedure should have never been done and has left me with a terrible condition called Empty Nose Syndrome.
It all happened so fast that it was over before I really had time to think about what has happening. It has changed my life forever. I had worked so hard to over come my sleep/breathing problems and now there seems little hope for a normal future. The Empty Nose Syndrome has wreaked havoc on my sleep as well that I had worked so hard to get a decent sleep architecture. You can see the effects of the surgery on my sleep architecture in the following hypnograms and charts of various sleep variables.
So I want to warn each of you who may be considering nasal surgery, please make sure you get it done by a competent surgeon.
I would also like to thank all you who have taught me so much over the years on this forum. I learned much more here than I never did from any doctor or sleep professional. I'd also like to thank my girlfriend Kelly who some of you have been talking to on a separate thread for without whom I would have not survived ENS this far.
After years of problems sleeping I was diagnosed with severe sleep apnea in the summer of 2006. This explained years of symptoms that often had been dismissed or misdiagnosed by doctors. Initially CPAP was a miracle cure dispute not being a very pleasant treatment. However over the next new months I developed increasing nasal congestion problems which as many of you know make CPAP use very hard.
It got so bad that I was basically suffocating and suffered several stroke like events during 2006/2007. I tried desperately to get medial help here in Canada but the system is badly broken and I couldn't seem to get anyone to help. At my wits end I eventually went to the US and had nasal surgery there twice by a fabulous doctor in Cleveland named Dr Howard Levine. (Someone on this board recommended him to me so I thank you for that) These surgeries helped quite a bit but did not cure the problem.
Up until the surgeries I could barely function, I was in constant agony most of the time from the combined suffocating and sleep apnea. After the surgeries I had headaches most mornings but they usually (but not always) wore off sometime during the day. I continued to try and get help in Canada but got no where.
I knew at some point I was probably going to have to have some type of additional surgery to deal with my narrow airway and I also really needed to find out what was wrong with my nose. However I kind of gave up after the surgeries in 2009 and since I could function somewhat. I chose to coupe by living though the daily morning agony and then going about life doing as much as I could to ignore my nightly problem. I got really involved in the community and developed a great group of friends after moving from Ontario to Nova Scotia.
However I still needed find a solution to the nasal problem and the narrow airway. In early 2011 I had had enough and wrote a letter to a local an ENT that I had seen asking him for a skin lined tracheostomy as it was clear I would never get the Canadian system to investigate more and there just didn't seem to be the expertise here. I knew there was help in the US but by this time I had used up all my savings just waiting around in Canada.
On March 3rd I saw the ENT and a terrible thing happened. Right there in the office without really me giving my consent he performed a third turbinate reduction. I was very unsure about it given that I had had it done twice in the past but he assured me it was safe. He was very aggressive and during the procedure burned a hole right though the musosa in my left nostril. In the end the procedure should have never been done and has left me with a terrible condition called Empty Nose Syndrome.
It all happened so fast that it was over before I really had time to think about what has happening. It has changed my life forever. I had worked so hard to over come my sleep/breathing problems and now there seems little hope for a normal future. The Empty Nose Syndrome has wreaked havoc on my sleep as well that I had worked so hard to get a decent sleep architecture. You can see the effects of the surgery on my sleep architecture in the following hypnograms and charts of various sleep variables.
So I want to warn each of you who may be considering nasal surgery, please make sure you get it done by a competent surgeon.
I would also like to thank all you who have taught me so much over the years on this forum. I learned much more here than I never did from any doctor or sleep professional. I'd also like to thank my girlfriend Kelly who some of you have been talking to on a separate thread for without whom I would have not survived ENS this far.