Saturday, May 29, 2010

Lateral Wall Implant Surgery

This is among my last blog posts I will write. I may provide a periodic update on the progress of my right nasal breathing as I just had a surgery yesterday, but I have tirelessly conquered so many health battles: from chronic sinus and throat infections to ear pain caused by TMJ to postnasal drip and dry mouth to my last frontier which is an improvement in my right nasal breathing (which is the subject of this post). I have found myself in disagreement with many well-intentioned, respectable doctors, have had some outstanding doctors looking out for my best interests, have pursued appropriate surgeries for myself, have fought a health insurance company (and won) that appears only interested in money rather than my health, and have gone with my gut and educated myself on how best to improve my health, and have tried numerous health remedies and strategies for treating ENS and related issues, preventative, remedial and tertiary, which usually turns out right and to my benefit. Now that I have made so much progress in my health, it is time for me to get away from doctors (and even this blog, sorry) to just focus on my family and enjoy my improved health thanks in large measure to my own efforts, and the prayers of others. This blog, however will remain for all to read. As mentioned before, I might also provide a periodic update on my improvements from this May 28th surgery. Thanks for reading and caring...

I am headed for another surgery with Dr. Houser on May 28th. I thought I would create this post for those considering implant surgery and those who have followed my progress over the years. I am actually doing very well, having improved symptoms on many fronts, but my breathing is still somewhat problematic; mainly, my right nostril feels too obstructed because of the septal implant. I could always just use afrin all the time, which does seriously help temporarily, but this clearly is not a long-term strategy and would cause rebound congestion. The septal implant feels a bit like a balloon that inflates and deflates depending on humidity, air quality, specific food eaten, and so forth. I'll plan to post after my surgery and offer a periodic update.

My main hope for this surgery is that I could have even breathing between my right and left nostril. It will involve a significant right septal implant reduction and it may include a lateral wall implant. I believe the lateral wall is a better place for an implant than the septum given its proximity to the turbinates. The nasal cycle causes the right septal implant to become too inflamed much of the time, causing a sense of obstruction and uneven-ness in breathing between nostrils, so in my opinion this drawback outweighs the benefits of the surgery - increased moisture, airflow resistance, and volume. In fact, I have corresponded with one person who had the septal implant removed and she felt it was the right decision for her. She noted that her dryness has not returned, so the moisture benefit has been retained over 9 months post-removal. Do I think I have gained from the septal implant? Absolutely, it probably has served to protect my mucosa and perhaps even help it regenerate, but my question is, is this the best place for an implant?

Below are symptoms that impact my breathing, particularly my problematic right nasal breathing (as opposed to my left nasal breathing, which feels almost normal), which are described before and after the implant, along with the intensity of the symptoms:

Symptom (in right nostril) - Before Septal Implant/After Septal Implant

Nasal Dryness -Mild/None to mild

Airflow resistance -Too little – Mild/Too much – Mild

Airflow “Sensations” -None- Severe/Mild to Moderate

Level of air space -Too open – Moderate/Too closed - Moderate

Mucus issues

*Recirculation *Fixed after maxillary antrostomy

^Postnasal drip/ recurrent infections ^Appears significantly helped by tonsillectomy

+Slowed MCC due to scarring, particularly in right sinus. +Still slowed MCC due to scarring in right sinus– will always be. No biggie!

A special thanks to TE, as we had discussed the above issues regarding implants and he helped me to see what I ultimately want from the surgery. It mirrored my own thinking, but sometimes it is hard to see the best solution when you are so close to the situation. As many of you know, he is a wealth of information for ENS, incredibly knowledgeable on implants and nasal breathing, and it was great to brainstorm with him. What is actually done (reduction, possible lateral wall implant) will be decided during my office visit on the day before my surgery. There is a chance I may have just a significant reduction to the implant, but if Dr. Houser feels he can give me even breathing/air space with a lateral wall implant, then that might be an option for me. And I am thankful to even have that option.

OK, I had my surgery yesterday in the early morning hours. I had to be at MetroHealth at 6 AM and the surgery began at 7:30 AM. Dr. Houser must be an early bird

At the office visit, Dr. Houser and I viewed the CT Scan of my sinuses taken in September 2009. Basically, it showed that I have roughly even air space between my right and left nostril in the upper portion of my nose as a result of my right septal implant, which compensates for the middle turbinates, which have been removed. So we decided to leave the upper right septal implant alone.

However, the lower implant that mirrors the inferior turbinate was bulging, and we decided to remove this to the extent possible so I could have more symmetry between my right and left side (my right side is primarily my ENS side). We also decided to add a small right lateral wall implant. It was ultimately a guess on this implant because we are both a) removing the lower right septal implant and b) adding the right lateral wall implant. So we are changing two variables at once. I tried a cotton test and did not notice much difference with the cotton, but the lateral wall is closer to the actual location of my right inferior turbinate. The nice aspect of having a lateral wall implant on the right is it is in the natural location and not likely to be as obstructive as a septal implant, plus it is smaller than my right septal implant and likely to resorb by 50%. So hopefully this will do the trick in providing me more natural, even and less obstructive breathing of the right nostril, which was basically my hope for this surgery.

Dr. Houser also identified a cyst in my left sinus, and removed it during the surgery. He does seem to be looking out for my blindside!

It's obviously too early to tell if this surgery will be a success, as I am congested and have plenty of crusting, bleeding, and swelling. It is as though my left nostril is clear as it was not operated on, while my right nostril is clogged, but this is just part of the healing process. The post-operative pain is minimal, as I am mostly experiencing it as a direct result of the breathing tube in my throat. I'll plan to write another post once I am much further along in the healing process.

Health Insurance protecting bottom line rather than my health

I genuinely wish I could state that I believed my health insurance was acting in my best interests to protect my health. Unfortunately, my health insurance company seems only interested in protecting the bottom line and doing only what is inside their contract. For people with ENS, this means a challenge to get the treatment we need. It is likely Blue Cross (and many other insurance companies) get paid more to deny surgeries than to approve them.

In desiring a lateral wall implant, a very reasonable (if not among the only) option for someone with empty nose syndrome, I have had to battle my insurance company - and, perhaps thanks in part to my persistence, I won. I have been approved for the lateral wall implant , but this was a 5-month battle, beginning in Mid-January. At first my insurance company, BlueCross, was not even going to grant me a prospective review, because I have an indemnity policy and Blue Cross stated experimental surgeries can only be granted retrospective reviews. In other words, they wanted me to go through with the surgery and stick me with the bill. I filed a complaint with the state department of insurance and, as a result, BlueCross granted me a prospective review and quickly denied the surgery on the basis of its contract which does not indicate use of alloderm in the nose; it was just a quick, knee-jerk denial, from my perspective. So I filed an appeal requesting my case be reviewed and that the doctor speak with Dr. Houser and review the literature on implants for ENS, but the doctor did neither. And denied me the surgery again.

Consequently, I filed another complaint with the state department of insurance on the basis of the doctor not granting me a fair review and I also filed an external appeal to be completed by an independent medical review board. Three doctors reviewed the case, all were ENTs and appeared to have strong credentials, and they all unanimously agreed to "overturn" Blue Cross' decision on the basis of ENS being an extraordinarily difficult condition to treat, Dr. Houser being the one doctor with experience in this area, and the implants being an effective if only treatment, although the research study is Level 4 (not a controlled, double blind study because that would be a difficult feat for any doctor to do given the uniqueness of our health condition). So BlueCross is now forced to grant me a pre-authorization on the procedure. Because ENS is so specialized and doctors have so little understanding on it, our battle to get a lateral wall implant approved is truly an uphill one. Which is a shame, as we ENS sufferers are already so limited in our treatment options.

But the point is, we can get this procedure approved if we persist in fighting for it.

Adult Tonsillectomy - a great decision

On April 19th, 2010, I had an adult tonsillectomy. I am 30 years old and have a history of chronic throat infections, as well as a diagnosis of obstructive sleep apnea. On top of that, I have had issues with dry mouth and postnasal drip. The pain from this tonsillectomy was actually quite intense for the week or so, as it was painful in my ears and upon swallowing, and tylenol just didn't cut it; I had to use the oxycodone prescribed for me to get through the first week. In contrast to what I have been through as an empty nose syndrome sufferer, however, I would gladly take a week of suffering over years of a) chronic discomfort in my nasal breathing, b) chronic throat infections, and c) ear pain caused by TMJ and mucus buildup near the base of my eustachian tubes. Although intense for a short time, going through with an adult tonsillectomy was cake compared to my other health issues I have been through.

The good news is this was an excellent decision, as I have already been enjoying the benefits. My mouth has been more moist, I seem to have less postnasal drip, and I recently did not incur a throat infection my son had had. (Prior to the tonsillectomy, I would always catch his cold and it would linger indefinitely). Needless to say, I believe it was a good decision and I feel thankful to have had it.

Like with many of my health decisions, I have had to be my own doctor. No doctor recommended the tonsillectomy to me. I find that, while doctors can provide a valuable source of information and I respect them for their expertise in their respective fields, my gut is usually correct and I need to educate myself if I want the best possible outcome. Three doctors recommended against the tonsillectomy, one stating I already had enough removed - referring to the turbinectomy, another stating that no doctor would do the tonsillectomy without 4 confirmed cases of strep throat in a year, and a third highlighting the value of the tonsils with respect to providing antibodies and lymphocytes. So I basically went to a local ENT (after doing some research on him) and said my physician from out of town would be glad to do the tonsillectomy on me, which he honestly would, but I do not want to be away from family for that long and I would prefer to be closer to the doctor who did the surgery in case of complications such as bleeding. He gladly agreed to do it, thinking it was a reasonable option for me. My tonsils were diseased, not that enlarged, but they were indeed causing symptoms.

I also am going to a new primary care provider who recently had her tonsils removed. Before the procedure, she supported me and though I was definitely a good candidate for it. She noted how, after the tonsils are removed, the other lymph glands work more effectively to remove mucus from the throat. And she was definitely right.

If you are thinking of a tonsillectomy for chronic infections as an adult, don't hesitate to do it. It might be intense pain for a short time, but the end result is totally worth it.