CPAPtalk.com

Posted: **Thu Jun 05, 2008 1:41 pm**

Anonymous wrote:Hi Titrator & all,

...... You may want choose get one side get it down forst instead of both as emtpy nose syndrom can be a painful thing.

According to my surgeon there is no longer an excuse for a patient ending up with empty nose syndrome. In the "old days" some surgeons did not know better and just removed practically the entire turbinates. Now they know better and leave enough for proper air flow. It should no longer be a concern unless you select a very poor surgeon. Get an ENT who has a successful history of these surgeries.

Posted: **Thu Jun 05, 2008 1:50 pm**

Rooster,

I asked my ENT the same question about empty nose. He said at one time, years ago, all ENT's did it, but that it is no longer a practice for a turbinate reduction. No more empty nose...

Ted

Posted: **Thu Jun 05, 2008 4:34 pm**

Apparently many people suffered as a result of poor surgical practice:

-----Original Message-----
From: Chris Martin [mailto:webmaster@emptynosesyndrome.org]
Sent: Wednesday, June 04, 2008 7:44 PM
To: webmaster@emptynosesyndrome.org
Subject: ENS newsletter - some *great* news

Dear Members,

Before I write anything, an *urgent message* - an opportunity we ENS sufferers cannot afford to miss: Global Television News in Ontario, Canada is seeking CANADIAN ENS sufferers who might be able to contribute to a story that presents a balanced presentation of nasal surgery. This is a television news opportunity to raise ENS awareness. Please, please read my link which includes an explanation and contact details to be included in this story (http://guest.6.forumer.com/viewtopic.php?t=2364) and if you are from Canada, consider this opportunity, or if you know someone from Canada, encourage them to contact this reporter so we can get a story. THIS IS A GOLDEN OPPORTUNITY- WE CAN'T AFFORD TO MISS IT:

.....I hope this email finds you well and enjoying nice weather. I am doing very well, just terribly busy of late between assisting family moving to the area and a very hectic end-of-the-school year at my job. On a health note, I have been receiving excellent care from Dr. Tichenor of New York City (http://www.sinuses.com). If you suffer from ENS and have sinusitis or allergies or asthma for that matter, I believe it is important to treat these other
conditions as well. I have found that treatment of ENS through implants
and treatment of sinusitis and allergies through their respective remedies has led to the best possible outcome for me.

This email includes encouraging developments for ENS including free airline flights, a national award for "Having Nasal Surgery?", a new reconstructive surgery section of the empty nose forum, what us ENS sufferers 'really' want from ENTs, and a petition (please sign!) and facebook/social networking group for ENS. Good news is happening....

1) LifeLine Pilots (http://www.lifelinepilots.org) has agreed to offer free charter airline flights to ENS sufferers. Thanks are in order to my friend Paul (who has his own Christian-based web blog at
http://emptynosesyndromehope.blogspot.com) for securing this super deal for ENS sufferers. This is great news, particularly for those who might be experiencing economic hardship with respect to ENS. Lifeline, Inc. dba LifeLine Pilots Suite 302, Byerly Terminal Greater Peoria Regional Airport 6100 W. Dirksen Parkway, Peoria, IL 61607 Hours: The office is open Monday - Friday, 7:30 a.m. - 4:30 p.m. Central Time. We are available on a
24/7 basis for changes regarding missions already scheduled or in progress.
The after hours cell number may be obtained after hours by calling our toll free number: 1-800-822-7972. Office: 1-309-697-6282 Office Fax:
1-800-822-7969 To speak to a Flight Coordinator: 1-800-822-7972. You may email a general question to: (mail@lifelinepilots.org).

2) Having Nasal Surgery? Don't You Become An Empty Nose Victim! won an Independent Publisher Book Award 2008. It was a bronze medalist in the national category of Health/Medicine/Nutrition. I hope this will stimulate media awareness. I wrote a press release on it at my blog site:
http://emptynosesyndrome.blogspot.com/2 ... -wins.html.

3) Join the discussion at the new forum section and read about what we really want from ENTs. Many people have offered useful feedback regarding their Alloderm implants on various sections of http://www.emptynosesyndrome.org, which most have found to be helpful in alleviating symptoms of ENS. I have not been able to transfer all these comments to the new forum section.
However, you can now post your comments about your experiences with Alloderm implants in this section. I wrote an introduction to this section, along with an explanation of what I believe us ENS sufferers really want from ENTs, at the following link:
http://guest.6.forumer.com/viewtopic.php?t=2342.

4) Sign a petition on ENS. You can view and sign this petition at:
http://www.thepetitionsite.com/tell-a-friend/691642. The following message has been typed: Hi, I signed the petition "Recognition of Empty Nose Syndrome". I'm asking you to sign this petition to help us reach our goal of 1,000 signatures. I care deeply about this cause, and I hope you will support our efforts.

5) Join us at Facebook. There is now a Facebook group called "Empty Nose Syndrome Awareness". To see more details and confirm this group invitation, follow the link below:
http://www.facebook.com/p.php??=1273045 ... 51LCYCZYQU
Everyone can join Facebook. To register, go
to:
http://www.facebook.com/p.php?i=1273045 ... LCYCZYQU&r

6) Watch the youtube ENS testimonials at https://www.youtube.com and search "empty nose syndrome." Thanks to those who have contributed and we look forward to more. Please consider adding your video and story to help raise awareness for ENS.

Sincerely,

Chris Martin

Posted: **Thu Jul 31, 2008 11:26 am**

hoosemec wrote:My doc performed an inferior turbinate reduction on my during a rhinoplasty to fix an old hockey injury to my nose (never had any breathing problems). Now its 4 months later, I have missed 50% of work and my entire life has been placed on hold. I was an extremely active guy up to the sugery. I belive my doc erred badly in judgement and it can happen to you, be very careful. My doc didn't even explain the procedure to me, all he said was it will help you breath better after the surgery - sounded pretty simple, now I'm screwed.

Yep. know that feeling. Long story short - Dumbass, gung ho ENT offered the surgery as I had deviated septum and apnea - Wouldn't give any details about the procedures (5), asked for details - he brushed off my questions. I should have run for it. Talked into surgery anyway. ENS city and still recovering several years later.

My own damn fault for not being more responsible, I took the easy answer and trusted someone because they should have been good at their job, instead of checking to see if they were. Never again.

Summary - It's hard/impossible to reverse surgery. Not all surgeons are equal. Some are little better than butchers with a degree. Some are super.

Be responsible for details of your health care yourself, no one else will be.

/End lecture+Whining. Sorry folks had to get it off my chest.

Posted: **Thu Jul 31, 2008 11:46 am**

d:
> Sorry folks had to get it off my chest.

No, it was important to say. Same thing happened to me. The newcomers learn from our experience.

Posted: **Thu Jul 31, 2008 1:26 pm**

danmc wrote:..........
Not all surgeons are equal. Some are little better than butchers with a degree. Some are super.

Thanks for the warning, DanMc. I had one of the super surgeons but shouldn't relax in picking the next surgeon for whatever ailment befalls me.

So sorry about your experience.

Maybe you already know about this resource: http://www.emptynosesyndrome.org/

Regards,

Rooster

Posted: **Thu Jul 31, 2008 8:14 pm**

Thanks Butch

Posted: **Thu Jul 31, 2008 8:32 pm**

I had a turbinate reduction and deviated septum repaired over 25 years ago and mine turned out just fine. My surgeon was great, I was saddened to learn he developed cancer and passed away a few years after doing my surgery.

If I subtract the Canadian report of ENS from all the cases I have read there seems to only be a handful of these cases and those in Canada.

Back when I had mine done, there were no CT scans or MRI scans only xrays and my surgeon still managed to get it right. I don't regret having that surgery one bit, if I had to do it again, I would in a heart beat. I used to get bronchitis every 6 months, it was only after seeing this one MD that wasn't my regular doctor did he have a looksie in my nares and indicated one side was nearly blocked. He sent me to the ENT surgeon. I still remember waking up in that surgery chair with him chiseling away, I squeezed the cute nurses arm and she gave me another squirt of the good stuff in the IV.

If you cannot breathe though your nose and have an over abundance of turbinate bony structure, get it removed so you can breathe. Breathing is something you need to do 24 hours a day, it dramatically impacts your energy not only your health.

My understanding is this ENS is extremely rare. Do a search they all take you back to Canada, hell just don't have your nose job done in Canada

Posted: **Thu Jul 31, 2008 9:14 pm**

Glad to hear you had success Snoredog. Looking back, I had a deviated septum and some apnea (My partner told me I stopped breathing for 20 or 30 secs so I told the ENT that) and severe allergies. I just feel that it was complete overkill and proper treatment should have started with a sleep study since apnea was the main concern - I wasn't even concerned with the deviated septum so much and this guy did all the throat work to (unsuccessfully) cure apnea...I mean, I didn't even know you could have a sleep study.

Allergy treatment according to my new respiratory specialist is simple and effective if I can stand the cost of all the needles, and it takes a couple years. But seems like I could have just had the deviated septum done, gone on cpap and allergy treatment and avoided the 6 months of pure hell after surgery and the last few years of recovery and wondering why the hell I feel like I can't breathe when I know damn well I should be able to. Even after about 12 months the guy was telling me that yes, I was still recovering thats normal. Hell, after surgery the nurses got pissed off that my oximeter kept beeping and the reading looked so low (my sleep study results show 50's) they figured it was broken-so they just turned it off after a while...lol...I only realised what it was in hindsight after my sleep study actually.

Trust me, surgery performed by the wrong people can be devastating. Grr those gumbies make me mad, sorry people ignore my anger.

ENS may or may not be as bad as it sounds for different people, but it's just a term for a collection of symptoms related to changed nasal structure. The symptoms are real. Before I ever heard of ENS I was trying to figure out why the hell I had these weird problems - can't breathe properly but my nose is clear. Tried to explain it to the doc and its...just hard to explain. The mucus you can't move at the back of the throat is friggin awful and definitely came with the surgery as well. I could go on. You feel like you're choking on snot, can't breath but your nose is getting so much air you have a nasty dry, itchy feeling a bit like brain freeze in your nose. I actually asked the ENT if I could have a psychological problem - my brain tells me my nose is blocked when it isn't. He Just chuckled. Bloody chuckler.

When I read about the complexity of the nose - the role of the turbinates, membranes, shape of the passageways etc, and wonder how it is that the body has so many parts that people think are removable simply because surgeons do it so often...it occurs to me how primitive some medicine really is. Look at circumcision in fact to prove that point. It's not the precision art and science that we often believe. I liken some surgeons to bricklayers smashing Michelangelo's sculpture of David and trying to rebuild it "better" with cinder blocks.

Empty nose syndrome is as real as the nose on my face in my opinion. How much it really impacts people is probably your point - hard to say on that I guess. No, sorry reading your post again you are simply pointing out that its rare- maybe you are right, hope so. Adding to what you said (hope you don't take my rant above as argumentative) I could suggest - don't get your nose job done in Canada or by my ENT

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