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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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jskinner
 
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My Update: Nasal Surgery and Empty Nose Syndrome

Postby jskinner on 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.
Last edited by jskinner on Fri Jul 29, 2011 8:46 am, edited 13 times in total.
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cflame1
 
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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby cflame1 on Thu Jul 28, 2011 5:21 pm

it's good to hear from you James.

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby DoriC on Thu Jul 28, 2011 5:23 pm

Hi James, so good to hear from you. Glad you're going to Cleveland, I know you'll be in good hands there.

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby Bright Choice on Thu Jul 28, 2011 5:28 pm

Oh my, what a story! Blessings to you and best wishes for a good outcome in Cleveland!

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby deerslayer on Thu Jul 28, 2011 5:46 pm

Thank You James
we are indebted to you as well !
praying all the pain & suffering are behind you now. Glad you have Kelly along side you .

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby JeffH on Thu Jul 28, 2011 5:56 pm

Hang in there my friend. It is good to see you posting again. Please keep us informed about yourself. You have many friends here and we are all pulling for you.

Thanks for all you've done for the OSA community.


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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby SleepingUgly on Thu Jul 28, 2011 6:02 pm

After all you've been through, the last thing you needed was help of the medical profession to make you WORSE! If you have a good relationship with Dr. Levine, perhaps he can have a look at you while you're in Cleveland seeing the doctor about the Empty Nose Syndrome. Best of luck to you!
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby jskinner on Thu Jul 28, 2011 6:30 pm

SleepingUgly wrote:After all you've been through, the last thing you needed was help of the medical profession to make you WORSE! If you have a good relationship with Dr. Levine, perhaps he can have a look at you while you're in Cleveland seeing the doctor about the Empty Nose Syndrome. Best of luck to you!


Yes its been _extremely_ hard to accept that a doctor has made me much worse rather than better. The amount of regret I have for it happening is overwhelming at times. I'm having a very hard time even accepting it has happened.

I have discussed the situation with Dr. Levine and he recommended that I go see Dr Steven Houser who is the expert on ENS. I have already given a CT Scan to Dr Houser and he has reviewed it. He hasn't given me a lot of hope at this point as there is very little mucosal tissue left on top of my turbinates under which to do implants or injections :-( Even if there was he has a rule not to do surgery for a year after the initial injury. He did mention the slim possibility of a temporary injection so I am hanging on to that hope at this point.
Last edited by jskinner on Thu Jul 28, 2011 6:51 pm, edited 1 time in total.
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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby GumbyCT on Thu Jul 28, 2011 6:37 pm

James are the hopes for a trach out the window or what has happened with that?

You are remember by many, many here. Our hopes and prayers are with you, my friend.

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby rested gal on Thu Jul 28, 2011 7:41 pm

James, I'm so very, very sorry to hear what happened.

I'll be wishing all the best for you when you see Dr. Houser in Cleveland.

Hope you have a safe trip and a very good outcome.
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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby jskinner on Thu Jul 28, 2011 7:59 pm

In order to not start feeling very ill I have to wear sinus cones in my nostrils at all times now. This helps increase the nasal resistance that the nasal surgery has broken . (Ironically sinus cones are normally used to decrease resistance not increase it)

Image
Last edited by jskinner on Thu Jul 28, 2011 10:49 pm, edited 1 time in total.
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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby SleepingUgly on Thu Jul 28, 2011 8:12 pm

How do those cones help? I'm not sure what you mean by "in order to not start feeling very ill"... Looks uncomfortable. :(
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby Slinky on Thu Jul 28, 2011 9:02 pm

James, I'm so so sorry that this has happened to you. I'm so sad to read of all you've been thru. I had had hopes that we were no longer hearing much from you because things had greatly improved for you. Good luck and God bless to you, dear friend to so many of us here.

How about I fly over on my broom to visit that "surgeon" and then use my broom to break his knuckles so he can never do surgery again?? :twisted:

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby gasp on Thu Jul 28, 2011 10:16 pm

It's so good to hear from you and to see you again! Your cones are genius and I'm glad they help somewhat. I think you deserve a lab rat award : ))

I think of you often and thank you for your wonderful app I still use to read my reports.

I doubt you have the energy or resources to sue the pants off the negligent doctor. That's the kind of negligence the legal system is meant to address in compensating the injured and preventing the doctor from continuing to act like God. Anyway, I'm with Slinky on the knuckles and after he should be sued.

I echo Rested Gal and hope you have a good outcome! There is absolutely nobody that deserves it more.

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Re: My Update: Nasal Surgery and Empty Nose Syndrome

Postby Pugsy on Thu Jul 28, 2011 10:24 pm

gasp wrote:I echo Rested Gal and hope you have a good outcome! There is absolutely nobody that deserves it more.


Same here James. Wishing you all the best and hoping you find some relief soon.

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