My visit with Dr. Tichenor and free flights for ENS sufferers

I posted the following message at the General Discussion Forum of www.emptynosesyndrome.org, but thought I'd share these messages here as well.

My visit with Dr. Tichenor

Having improved in various ways via the implants, such as increased moisture and heat in the nasal mucosa leading to thinner mucus, improved sleep, increased airflow resistance, I still have some issues to deal with, so I visited Dr. Tichenor. These issues I am trying to tackle include chronic postnasal drip, irritated throat and sometimes bothersome ears.

The visit with Dr. Tichenor went very well. He was very thorough and gave me red carpet treatment. Dr. Tichenor really showed me he was trying to get to the bottom of my issues, unlike most other doctors. It took me about 1-2 hours to fill out all the paperwork regarding my presenting issues, the biggest of which was an irritated throat. He is a soft-spoken doctor who takes his time and listened to my concerns. The nurse also took quite a bit of time with me before I met with Dr. Tichenor. Dr. Tichenor did 4 mucus samples, taking 2 from my nasal vestibules and 1 from the base of the maxillary sinus where mucus built up, and 1 from the ethmoid sinuses where I have a lot of scarring. Depending on results of the cultures, he will determine whether any additional medicine is warranted. Most doctors don't draw cultures because it is not cost effective medicine. He also had his nurse draw my blood to check out my immune system. I had a pneumonia shot about 2 years ago (you are supposed to get one every 5 years) and he wanted to see if it was effective enough in boosting my immune system. So depending on the results of the blood drawn, his office will determine whether I should proceed with another pneumonia shot. Dr. Tichenor also did a nasal endoscopy using a flexible endoscope -as opposed to a rigid endoscope - which was attached to a video monitor. He talked into the video monitor while investigating my nose. He said I might have some mucus recirculation on both sides of the nose in part caused by the uncinate process and one of the ostia (drainage holes) could be made larger. Dr. Tichenor recommended I do not need surgery if I feel better in the future, particularly with respect to my mucus/postnasal drip issues, and there is always a chance such a surgery could make me worse and some doctors might be reluctant to operate on me anyway given my extensive tissue loss; but I could entertain it at a later time. And if I did it at a later time, it must be done using computer-aided imagery, probably for safety reasons....so I'm not entertaining it now but it is an option for me to improve my sinusitis if need be at a later time, but hopefully I can avoid it (This surgery is the same as the one recommended to me in 2003, as noted in my book, but they would not have used computer-aided imagery, so I'm thankful it was avoided.

Dr. Tichenor is also entertaining possibly giving me a round of allergy tests, as he thinks my allergy injections might not be helping me enough and should be reevaluated. All in all, I felt like this visit I was treated as a first-class citizen and he really seemed to be getting to the root of my sinusitis problems (in part caused by ENS). If I can get some of these issues under better control, such as postnasal drip and my irritated throat and ears, I am going to be doing all right.

Glad I had implants and now I'm glad to be solving the other part of the puzzle....If you are in the NYC area or elsewhere and suffer from allergies or sinusitis in addition to ENS, consider paying Dr. Tichenor an office visit. I was glad I did.....

Lifeline Pilots

Thanks to efforts from my friend Paul (http://emptynosesyndromehope.blogspot.com), he has notified me that LifeLine Pilots (http://www.lifelinepilots.org) has agreed to offer free charter airline flights to ENS sufferers. This is great news, particularly for those who might be experiencing economic hardship with respect to ENS. I informed Dr. Tichenor of this development and he was encouraged, as he mentions this group on his website as well (http://www.sinuses.com)

Lifeline Pilots the shortest distance between home and hope
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.

E-Mail a general question: mail@lifelinepilots.org

Watch the video testimonials...

I encourage you all to go to www.youtube.com, type the phrase of "empty nose syndrome" and then watch the video testimonials of ENS, including my own. We have so far 5 people granting testimonials on youtube (4 more have done them already but just not posted yet to youtube), and all these testimonials do such a great job at describing their symptoms and all they have been through as ENS sufferers. Please visit them and rate them or offer feedback, as I need to do as well. If you are an ENS sufferer or a doctor who is familiar with treating empty nose patients, please consider making a video for youtube. A short video of 5 minutes could go a long way for ENS awareness.

Also, I want to encourage you to visit my friend's web blog (who would prefer to remain anonymous) at http://emptynosesyndromehope.blogspot.com. This blog is a Christian-based blog for ENS. I enjoyed reading the Scripture and found the song "Praise you in this storm" to be quite soothing.....thanks to this friend for making this blog.

CPAP forum and ENS Awareness

I've noticed some people coming to this blog from the following CPAP forum: http://www.cpaptalk.com/viewtopic/t29862/Turbinate-Reduction-Deviated-Septum-Surgery-Quesiont.html.

While I appreciated the attention brought to empty nose syndrome at this forum, some of the comments made at this forum really made me realize the number of obstacles ENS is up against in raising awareness. Unfortunately, I have ran into these obstacles quite regularly due to widespread lack of knowledge on ENS. Thank goodness for the Internet because, if it were not for the Internet, ENS would still be a totally silent problem and doctors would still be mum about it. Because of the Internet, they are forced to respond and take ENS more seriously, and ENS sufferers can correspond with one another more readily. Lines of communication threaten dictatorships. My book might not have been as successful as it has been, either.

So let me reply to the CPAP forum at this blog. I'd post directly on the forum, but rather than create my own username and password, I thought it would be easier to reply here. If anyone wants to reply to me, they can reply to this blog. I do need more comments at this blog ;)

One of the posters wrote the following myth: "Ignore all the dry nose syndrome warnings, that is rare and can be avoided by following suggestion #1." Suggestion 1 was to go to an experienced, conservative ENT. Here's my reply: Dry nose syndrome ("rhinitis sicca") is a term that seems to downplay the significance of ENS. Many people have dry noses as a temporary complication after nose surgery, but doctors might prefer us confuse a mild, short-term dry nose with something far more serious known as ENS. ENS has not only the long-term complication of dryness, but often many serious symptoms as well. Secondly, the poster claims ENS is rare, another false claim made by doctors who would rather just have us be quiet and disappear. Primary atrophic rhinitis is rare. ENS, sometimes known as secondary atrophic rhinitis, is not. And that's a fact. I had a book signing locally so I learned of many ENS sufferers in my area who have it as a result of turbinate surgeries by a well-liked doctor, not the one who did my surgery. I am aware of other very well-known doctors who are causing ENS as well. I, too, would think it was rare if I did not have it or my book signing. As do most people in my area....although now I know that it is possible hundreds in my immediate area have it. With 400,000-500,000 turbinate surgeries performed each year in the US, it stands to reason that more are suffering from ENS than just a few rare. Many likely have ENS, but don't know it. Their symptoms might be more mild than mine, however.

Another poster commented: "I feel very sorry for anyone who has empty nose syndrome - it is horrible. However, ask your surgeon about it. Mine said it was caused by surgeons reducing the turbinates down to nothing. He said most surgeons are now well aware of it and are careful to leave appropriately sized turbinates." ENS sufferers want respect, not sympathy, but I do appreciate the concern. However, your doctor was wrong in suggesting it is only caused by surgeons who reduce the turbinates to nothing. While it is true that reducing the turbinates down to nothing does cause ENS and doctors are more aware of ENS and conservative than they used to be even just 10 years ago, there is still great ignorance about ENS among doctors and patients, and some patients are still dealing with ENS from surgeries in recent months......Turbinate surgeries where either part or full turbinates are removed, the middles and/or inferiors, can cause ENS. I have corresponded with someone who had just 40% of her inferior turbinates reduced, and she has been experiencing harrowing symptoms. Or consider in Dr. Houser's newest research article, "Surgical Treatment for Empty Nose Syndrome," he describes ENS-Type, which is where the turbinates seem fully intact although previously operated upon, but the patient is still experiencing ENS.

Don't get me wrong, I'm sure many doctors would still like us to believe ENS is rare and only happens when an extreme amount of the turbinates are removed, which is really the means to protect a profitable business. Nasal surgery could often be avoided if the patient knew enough strategies to reduce the size of the turbinates through natural means, allergy treatment, proper diet, hydration, saline irrigation, etc.....

As an aside, go to www.youtube.com, search for "empty nose syndrome" and watch these video testimonials. Mine will be posted soon. There are four posted, including one from "Kathy Esckilsen" but 5 others have made videos and hopefully they will be posted soon as well. It shows some testimonials from ENS sufferers; they are revealing and powerful. I look forward to seeing many more in the coming days.

My reply to Jason

Jason,
Here's my opinion for whatever it's worth: the cotton test can help you determine whether you want to follow through with an implant. It is important for determining the size and location of an implant. Since more is being placed in your nose, rather than removing a critical structure as in a turbinectomy, chances are you will only improve. It is adding some needed tissue inside your nose that can partially restore functions. The implant would only make you worse if too much is put in, but this can always be taken out later on if need be.

You mentioned sleep, your earaches and your throat, wondering the effect an implant has on these. In my experiences, the implant has improved my sleep to an extent, as it does increase resistance and helps direct airflow in a more orderly patterns, but has had little effect on my earaches. I still have them. Yet the resistance does seem to have helped my voice get closer to normal most of the time. I have thinner mucus due to increased moisture and heat in my nose, but I do still experience postnasal drip. The jury is still out, in my view, on whether the implants help my throat and perhaps that is because the postnasal drip still impacts upon my throat. I am visiting Dr. Tichenor (http://www.sinuses.com/) who wrote the introduction to my book on April 17th to get further opinion on my ears, nose and throat and will report back here after that. My ears and throat tend to be my most troubling symptoms at present, although I have greatly improved over the years thanks in part to the implants. Going to New York City will not only be helpful for some answers with respect to my nose, but it is also a good opportunity to have fun and it is a time for my father and I to bond.

In the meantime, a friend of mine has started a blog. Check it out: http://emptynosesyndromehope.blogspot.com/