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The Quest for the Best Eardrum Surgery in the U.S.


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John’s Ear Fungus and Perforated Eardrum Story

 

It was late June when we discovered that John had a fungal infection in his ear. I’m not sure how long he’d had the infection. He’d been complaining about an ear ache off and on for a little while, but it didn’t seem like anything serious. The pain was mild and it would come and go. But one night, on the way home from a trip to the mountains in Colorado, John started complaining about it more. It was really bothering him. So we stopped at a Walmart to see if they had an otoscope for sale. Luckily, they did.

 

When I looked in John’s ear with the otoscope, I wasn’t expecting to see what I saw. I’d shadowed General Practitioners for several years and so I’d seen inside normal, healthy ears. But John’s ear canal was filled with “mold”, or at least that’s what it looked like. I’d never seen anything like it. Black and white stringy tendrils filled his ear canal. I couldn’t even see his eardrum. A few hours later, the pain was suddenly relieved, but John said he couldn’t hear out of it very well. John’s eardrum had “popped”. We’d discovered the fungal infection in his ear too late.

 

I regret now that I didn’t just have an otoscope on hand for situations such as this. I might’ve caught John’s ear fungus sooner. Honestly, I’m always surprised to see diagnostic tools like otoscopes on sale because in my youth, such things were not available for purchase. Now, I even bring our little otoscope with us when we travel. If one of us has an earache, I use it with great care so as not to create another hole in the ear. Never stick an otoscope or anything else into the ear willy-nilly. Ear hole surgery, as I learned later, can be a convoluted thing that can lead to huge expenses later, if you’re not careful.

 

The big expense that I’m talking about is hearing aids. Hearing aids are the product that Ear, Nose, and Throat Clinics sells to make big profits. And if you think about it, the high-profit sale of hearing aids could motivate ENT’s to do a less than spectacular job treating ear problems…but I’ll talk more about that as well as hearing aid alternatives later.

 

After being given the wrong treatment in Ogallala, NE by a doctor who sprayed an anti-fungal powder into his ear, John eventually went to Dr. Connely, an Ear Nose and Throat doctor in Kearney, Nebraska. There, he had to have his ear cleaned once a month for three months. He went by himself for these initial appointments at ENT Physicians of Kearney while the fungus was clearing up. The treatment was painful because the area behind his eardrum was exposed and the area inside the ear canal is quite sensitive to touch. In Kearney, he rarely saw the doctor. Most of the work on the ear fungus was done by the Physician’s Assistant (PA).

 

Once the ear fungus had cleared up, it was time for the actual Dr. to look inside John’s ear canal and to tell us more about the perforated eardrum. I went with John to this appointment. John had been talking about the doctor for the past few months telling me that he wasn’t especially warm or informative but I kept an open-mind about him since John hadn’t had a lot of contact with him yet either.

 

By this time, I’d done a lot of research on eardrum repair surgery and I knew that I was more in favor or myringoplasty than tympanoplasty. Myringoplasty, a procedure that attempts to patch the eardrum hole using a special patch made of cigarette-paper-like tissue. Myringoplasty is quite a bit less traumatic than tympanoplasty and it only takes 15 to 30 minutes to perform, usually outpatient in the doctor’s office using local anesthesia. In contrast, tympanoplasty is surgery. Patients undergoing tympanoplasty surgery are given general anesthesia and the procedure is performed in a hospital. In some cases, the outer ear auricle must be removed (and then stitched back in place later) in order for the doctor to gain access to the eardrum. A typical tympanoplasty takes 2 to 3 hours.

 

Whenever our family is faced with the option to have surgery, I always first ask whether the problem will self-repair. Is surgery really necessary? Because the fact is, the body heals itself. Surgery does not heal the body. I mean, after surgery, the body still has to heal itself. It can sometimes be necessary to have surgery, yes, but surgery, like many pharmaceuticals, is often unnecessary, if not ultimately harmful.

 

I’m not a doctor and I don’t know it all, so I had reservations about what to do with John’s ruptured eardrum despite the fact that I’d been reading all the research available online about tympanoplasty, myringoplasty, and experimental procedures that are available in some parts of the world. I’d been looking in John’s ear several times a week with my little Walmart otoscope at home while the ear fungus was slowly going away and I could see at least part of the eardrum and the perforation; the part that wasn’t obscured by the turn in his ear canal. The hole wasn’t small, I guessed that it took up perhaps 25% of the drum, but I acknowledged that I was no expert either. His hearing from that ear was poor and as an ex-pro musician, John was anxious to fix the problem. At the same time though, he was scared that he’d lose all or most of his hearing if he had the tympanoplasty procedure that was on offer in most ENT offices throughout the country.

 

Early Nights and Tennis

 

When we went to the ENT in Kearney for John’s pre-surgical evaluation, I didn’t know that the letters “E.N.T.” are jokingly said to stand for “Early Nights and Tennis” among those who choose this medical specialization. Dr. Connely walked into the room and looked in John’s ears. He didn’t acknowledge me probably because I’d made the mistake of mentioning to the nurse and the P.A. that we were hoping to avoid a tympanoplasty surgery and instead find a procedure more likely to result in John’s actual eardrum tissues healing. We were aiming for John’s ear to heal well enough for him to hear without a hearing aid.

 

John’s perforated eardrum was on his right side and rather than going over to John’s right side with the otoscope to carefully look into John’s ear, Dr. Connely leaned awkwardly over John as he was reclined in the chair and had John turn his head. The doctor then poked his otoscope into the ear at an awkward angle. I could tell the Dr. Connely was flustered. He was angry. So angry that he was being haphazard. After having looked in John’s ears myself every day for 3 months since his ear perforation, I knew that Dr. Connely couldn’t see John’s eardrum perforation at the angle he’d used to look in the ear. And he took very little time to really look at it before he announced that the perforation took up 70% of John’s eardrum.

 

This sounded like bad news for several reasons, but the most important one was that I was fairly certain that the perforation did NOT take up 70% of John’s eardrum. I’m not an expert, but I’d looked in John’s ear at least 100 times (literally) over the 3 months while the ear was healing and being cleaned.

 

“When I looked in his ear, the hole looked smaller than that.” I said.

 

The doctor looked down at his clipboard. He didn’t acknowledge my words and refused to make eye contact with me. I said, “I’d like to explore surgical or non-surgical options with better outcomes than the tympanoplasty surgery that involves patching the eardrum with skin from another area of the body.” Dr. Connely stared at his clipboard, pouting.

 

It was far and away, the most immature display of behavior I’d ever seen from a doctor in all my years of working in medicine and being a patient myself.

 

“I’d recommend tympanoplasty surgery.” He said looking up at John.

 

John said, “I want you to talk with my wife about that.” Connely looked back down at his clipboard and flipped a page over briskly, angrily.

 

I said, “I’ve read the research and I don’t…” I trailed off purposely and waited for the discomfort of an unfinished sentence to sink in. I leaned forward in my chair until my eyes were low enough that he could no longer avoid my gaze. “I don’t like the statistics.”

 

“Well, if you don’t want to do tympanoplasty, you can go ahead and just TRY to find someone else who’ll do it your way.”

 

I got up from my chair and said, “Are you willing to consider other options for John or not?”

 

“No.” He said, “And you’ll never find anyone else who will either.”

 

“Then you’re not the doctor for us.” I said and John got up from the exam chair and we left.

 

It was an upsetting encounter…

 

 

On the way home, John and I talked about his ear. We’d done some research and we knew that there were alternative perforated eardrum treatment options out there. We also knew that they wouldn’t be easy to find because of the fact that many (not all) ENT’s in the United States are not especially passionate about fixing people’s ears. They’re passionate about the easy lifestyle and the money they can make from people who desperately want to hear. While I sat in the Kearney ENT office waiting for John’s appointment, I listened as a white-haired old woman wrote a check for $6000 for hearing aids. And I had a conversation with a woman who worked at McDonald’s and had been going with her baby son to Dr. Connely since the baby had been born 18 months prior. The poor little boy had had 9 ear infections since that time and still, the doctor hadn’t recommended tubes. Was he waiting for this woman’s son to lose enough of his hearing permanently so that the family would spend the rest of their lives buying hearing aids for him?

 

Most ENT offices in the U.S. include an Audiology Clinic where people who have seen the ENT can go to get hearing aids when the surgery or procedure used to “fix” their hearing problem doesn’t work. Few patients realize that the ENT/Audiology Combo Clinic is a problem. Pairing these two businesses together creates a conflict-of-interest. The Audiology side of things stands to gain from problems that arise on the ENT side. It’s not unlike the profitability of chemotherapy and radiation, which are two cancer “treatments” that also cause cancer. Or the use of toxic polymers in surgical devices like hernia mesh that ultimately make patients into repeat customers. The wise American patient looks for the Money Tree before they sign up for a treatment, surgery, or procedure. How do pharmaceutical companies, doctors, or hospitals stand to gain from a recommended treatment protocol? Identify the Money Tree…the way in which Big Pharma, doctors, and hospitals make money and that will help you see the treatment more like a used car and less like your only hope. Do you want to buy it or not? Are you being sold a lemon or is this treatment going to honestly get you what you want?

 

(Before I continue, be sure to read about hearing aids hacks and how to find hearing aid options that won’t bankrupt you, if this is pertinent to your situation.)

 

John and I decided that we needed to look for an ENT who was not attached directly to an Audiology Clinic, if one existed. And we decided to look into experimental treatments as well as ENT’s overseas. I’d read about something called the irritant oil method for healing perforated eardrums and this was the treatment that I really wanted to try first because if it didn’t work, then John could still have a surgical procedure later to fix his ear. The irritant oil method of eardrum repair was once the standard treatment that was always used first on patients, before American medicine turned into a big profit-driven industry.  Myringoplasty with a paper patch was similarly non-committal. He could have myringoplasty done on his ear and then have a different treatment or even perhaps another myringoplasty if it didn’t work the first time [1]. In fact, I’d read about myringoplasty treatments that were used to encourage even a just little bit of eardrum regrowth to make the tympanoplasty surgery less invasive or more likely to have good hearing outcomes. But tympanoplasty was a one-time deal. Once John had this surgery, if it didn’t work, it couldn’t be undone. There would be no other options.

 

In the days before Big Pharma and the development of high-tech procedures like tympanoplasty, all patients were offered the irritant oil method to repair their eardrums following perforation. Using the irritant oil method, a patient does weekly doctor visits for 6 to 10 weeks wherein an irritating blend of oils are placed in the ear to encourage the eardrum to repair itself. This is how it works:

 

Irritant Oil Method for Perforated Eardrum: Natural Treatment

 

In the doctor’s office, the outer edges of the patient’s eardrum perforation are opened back up or debrided so that they’re “raw”. This can be done carefully in a clinic by an experienced doctor without anesthetic, but phenol solution can be used as anesthesia, if necessary. Once these outer edges are opened back up, they can grow again. The goal is to keep the edges raw and irritated so that the body spurs regrowth of the tympanic membrane. A cotton ball that is 1-2 mm larger than the diameter of the eardrum perforation is place is applied to the hole in the tympanic membrane.

 

To continually spur regrowth of the eardrum, the patient instills a solution of irritative and aromatic oils into the ear every day. The irritant oil solution is formulated by a pharmacy and contains (all substances United States Pharmacopoeia [USP] grade):

 

2 mL Eucalpytol

1.1  mL Methyl Salicylate

0.39 g Thymol

0.455 g Menthol

1.20 mL Oil of Orange

20.25 g Sifted Powdered Sodium Borate

20.25 g Powdered Boric Acid

60 mL of 90% Ethyl Alcohol

Saffron for color

Water in sufficient quantity to make a total of 5000 mL

The cotton much be replaced weekly and the doctor must freshen the edges of the perforation as well if necessary [3].

 

Myringoplasty and the Irritant Oil Method of eardrum repair both have in common the roughening up of the edges of the perforation in order to spur natural regrowth of the eardrum. In Myringoplasty, trichloroacetic acid (10% solution) is used to make the outer edges of the hole raw. Then, a small patch of cigarette paper (rather than a cotton ball) is applied to the eardrum perforation to act as a sort of “matrix” onto which new growth can cling. Myringoplasty has a 67%-73.75% success rate [3] [2], but I’m not sure how “success” is calibrated in terms of eardrum repair. For example, this study talks about how the roughening up of the perforation edges can sometimes lead to enough regrowth and closure of the hole in the eardrum to make myringoplasty (with the cigarette paper) into a procedure that’s much more likely to work. This makes me wonder why the use of chemical debridement of some kind – either to follow up with the irritant oil method or the use of cigarette paper myringoplasty – isn’t the first treatment offered to patients with a punctured eardrum. Yes, irritant oil and myringoplasty has a lower “success” rate than tympanoplasty. In other words, it may not work to close the hole. But if irritant oil or myringoplasty doesn’t work there’s no harm done. And if it does, it’s much more likely that the patient will hear better because their own eardrum tissues repaired themselves. When a piece of muscle or fascia or some other non-eardrum-like tissue is pulled from another area of the body to “patch” the hole (as it is in tympanoplasty surgery), it’s less likely that the patient will hear well even if the eardrum hole is completely sealed. This is where the word “success” is misused in terms of eardrum repair surgery. “Success” as it is used in most of the research and on ENT websites means the hole is closed, not that the patient can hear well.

 

Just like a real drum, if you try to use a material that doesn’t resonate as well as goat skin to make a drum, it won’t sound as good. The same thing is true for an eardrum. Eardrum tissues are unique in the human body, so if you patch the hole with a piece of tissue that isn’t “eardrum” tissue, it won’t work as well [4] [6].

 

But finding a doctor of any kind, ENT or otherwise, who will perform the irritant oil method of eardrum repair is difficult, if not impossible in the United States and most developed countries that have been overtaken by western medicine. Just finding a doctor who will do myringoplasty using the cigarette paper is also difficult. Tympanoplasty is more popular, I speculate, because it leads to more hearing aid sales. People like to be able to hear. So they’ll pay whatever they need to pay for hearing aids when the tympanoplasty surgery leads to less than optimal hearing.

 

And, did I mention that the irritant oil method has much lower returns for doctors and pharmaceutical companies than tympanoplasty? Hmmmm….

 

John and I were scheduled to leave for Egypt in less than a month when the ENT in Kearney told us that the hole in John’s ear took up 70% of his eardrum. And we decided to leave the hole until we returned three months later to see if it would possibly regrow. While we were overseas, I did research to try to find a place somewhere in the world where they wouldn’t just do a tympanoplasty on John’s ear. I found a man in Australia who was working on stem cell research for eardrum repair, but his research was limited to poor indigenous children. I sent him an email, but he never responded. Recently, I found a study on the use of stem cells for eardrum repair in the United States, but the use of “copolymers” that are FDA approved are a bit worrisome (read about how the polymer polypropylene has destroyed people’s lives in this article about hernia mesh). What’s the copolymer in question? It’s very possible that this stem cell study was conducted by the pharmaceutical company that manufactures the copolymer matrix, but that’s the subject for yet another article (summary: often Big Pharma will commission flawed research to sell a product and then solicit doctors with no knowledge of the study or its results who’d like to have their names on the study-it lends credibility to the research and the products to have real doctor’s names on the studies and the doctor’s get a financial boost from their “research activities”- it’s win-win for Big Pharma and doctors, but lose-lose for patients). Unfortunately, the FDA often approves medications that often cause severe side effects (this benefits Big Pharma because they can sell these patients more medications for their new symptoms). Still, stem cell research is promising, particularly in other countries that use safer materials. A New Orlean’s startup called Tympanogen is trying to develop a gel called Perf-Fix that can be applied at the doctor’s office. Perf-Fix is supposedly going to be made from “regenerative materials” and antibacterial agents. But at the time of this writing this is still a product in its infancy. And if it gets approval from the FDA, beware of any substances that might inserted into the ear permanently. Do your own research and ask all the unpopular questions or you won’t know what you’re really getting until it’s too late.

 

Six months after we fired Dr. Connely in Kearney, we arrived home from Egypt and started working on finding a doctor who would work with John as a human. I searched primarily for doctors who might be willing to do the irritant oil method or cigarette paper myringoplasty. I was open to other ideas, but more-or-less, I just wanted a doctor who would acknowledge our words and consider our ideas. I didn’t want John to be treated like a factory-produced item. I called and emailed Ear, Nose, and Throat doctors across the nation and the world in search of someone who would consider doing the irritant oil method or myringoplasty. My hope was that I would at least find a doctor who would be willing to try myringoplasty or irritant oil to diminish a hole that supposedly took up 70% of John’s eardrum. I made contact with 22 different doctors and clinics in the U.S. and around the world. Not one of them was willing to do these procedures to diminish the size of the hole in John’s eardrum.

 

Then one day, as I was searching online, I found Dr. Benjamin Asher in New York, New York. I must’ve used some different Google search terms like “holistic ENT” or “holistic eardrum repair” to find him. I couldn’t believe it. I’d been searching and searching and then, there he was: a holistic ENT.

 

Dr. Asher is an M.D. works as a holistic ENT and an integrative medicine practitioner. He takes an innovative and non-surgical approach to medical problems including eardrum perforation. I honestly couldn’t believe that he existed and that he was willing to consider doing the irritant oil technique on John’s ear. John and I set up an appointment to speak with him over Skype before making the trip from Nebraska to New York.

 

Dr. Asher took time out of his schedule to speak with us at no charge, which was commendable and rare. He didn’t think it was a good idea for us to go all the way to New York and spend over 2 months there just so that John could try to irritant oil method of eardrum repair. Instead, he recommended a colleague of his, Dr. Bruce Gantz at the University of Iowa Medical Center as an excellent ENT who was only an 8 hour drive from our home. He told us that Dr. Gantz wasn’t like the other ENT’s we’d been talking to. We got his number and called to make an appointment to speak with him directly.

 

Dr. Gantz called while we were looking at used vehicles for our business. We set the phone between us and asked Dr. Gantz if he would consider the irritant oil method or myringoplasty for a hole that took up 70% of the eardrum. Dr. Gantz wasn’t confident that either irritant oil or myringoplasty would work on a hole that size and one that was caused by a fungus, but he listened to us and thought about it. First of all, he wanted to see the hole for himself. But he told us that he did a procedure that would rough up the edges of the perforation and then use a matrix made of John’s own cartilage to support eardrum regrowth. So John’s own eardrum would repair itself, which would be more likely to result in decent hearing. And Dr. Gantz would be using John’s own tissues which meant there would be no problems with strange substances being inserted permanently into John’s ear that could be later be rejected.

 

We wanted to make sure that Dr. Gantz would treat John as though he were a human being and listen to our thoughts and collaborate with us. We wanted to just feel comfortable with Dr. Gantz since he was going to be doing surgery on John’s head. And Dr. Gantz lived up to all of those things. He was personable, knowledgeable, respectful, and he educated us about the procedure he planned to use to repair John’s eardrum. The call went well and we scheduled a consultation for John that would be followed by a procedure (since we’d be driving 8 hours one way). University of Iowa Medical Center staff, where Dr. Gantz worked, called John to schedule the consultation for one day and then the surgery for the next. They were easy to work with and also knowledgeable and friendly.

 

Let me begin by saying that the University of Iowa ENT team is rated top in the nation for a reason. Their entire staff was amazing. Even the woman scheduling the procedures was top notch (she had a line of people at her desk and she remembered all their names after she’d seen them only once). The whole experience from beginning to end was seamless and in many ways, idyllic. Once in the office, Dr. Gantz along with several other students and members of his staff looked at John’s ear and then confirmed that the hole was indeed much smaller than what Dr. Connely had claimed. We got to see inside the ear with a special video camera otoscope. I took a photo of the video feed so John could see the hole. And whaddaya know? The hole only took up only 25-30% of the eardrum as confirmed by the doctor. That was excellent news because it meant that Dr. Gantz could easily make use of John’s own healing abilities to cause the eardrum to regrow.

 

John’s procedure involved the harvest of a very thin piece of cartilage from his ear canal that would be used as a matrix upon which his eardrum would regrow. The outer edges of the eardrum was debrided, packing and support material was placed behind the eardrum, and then the cartilage, which was taken from his ear canal and processed so that it was like a piece of mesh, was put into place behind the eardrum. The ear canal was then packed to protect the eardrum. His eardrum would heal such that actual eardrum tissue would grow over the cartilage matrix while the packing material slowly decomposed and fell out of the ear through the Eustachian tubes over the course of about 6 months.

 

As far as I was concerned this procedure was an excellent compromise that embodied the basic idea that John and I were hoping to find: we wanted his own eardrum to heal itself, if at all possible. It took time to finally find doctors who were willing to do a procedure that would encourage his own body to heal itself, but with effort, we were able to locate those doctors. They’re out there, especially if you’re willing to go out on a limb and travel to find them.

 

John’s eardrum surgery cost $8000 out of pocket, but the procedure didn’t end with permanent, synthetic materials left inside his body. He has not and will not be a repeat customer because of the surgery. And John’s hearing is good now. He doesn’t need a hearing aid, but it’s taken about a year for him to start being able to hear normally again. The doctor told us it would take 6 months for John’s hearing to return, but I think it took closer to a year. We opted out of a post-surgical audiology assessment 6 months after surgery because we didn’t want the audiology results to color John’s own experience of his hearing abilities. John still has some hearing loss, but mostly, he doesn’t notice it. And he certainly doesn’t need a hearing aid, so the cost, though substantial, was worth it in the long run given that hearing aids can cost thousands of dollars and be difficult to use and John doesn’t need one now.

 

While John was recovering from his eardrum repair surgery, I did a lot of research on hearing aids and found some interesting, affordable options for people who don’t end up with acceptable hearing after a tympanoplasty. If you have hearing loss and you can’t afford to spend $6000 on hearing aids, you can read more about cheap hearing aid alternatives here.

 

References:

 

[1] Dong-Hee, L, Jisun, K., Eunhye, S, Yulgyun, K. Yesun, C. (2016). Clinical Analysis of Paper Patch Myringoplasty in Patients with Tympanic Membrane Perforations. Available online: http://www.advancedotology.org/sayilar/92/buyuk/142-146.pdf January 10, 2017.

[2] Santhi, T. & Rajan, K. V. (2011). A Study of Closure of Tympanic Membrane Perforations by Chemical Cauterisation. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3477427/ January 10, 2017.

[3] ENT Specialists (n.d.). Tympanoplasty. Available online: http://www.entslc.com/ent-care/ear-hearing-balance/ear-education/tympanoplasty/ January 10, 2017.

[4]Phys.Org (2015). Researchers Sound Out Scaffolds for Eardrum Replacement. Available online: http://phys.org/news/2015-05-scaffolds-eardrum.html January 10, 2017.

[5] Mota, C., Danti, S., D’alessandro, D., Trombi, L., Ricci, C., Puppi, D. Dinuccio, D., Milazzo, M., Stafanini, C., Chiellini, F. (2015). Multiscale fabrication of biomimetic scaffolds for tympanic membrane tissue engineering. Available online: http://iopscience.iop.org/article/10.1088/1758-5090/7/2/025005/meta;jsessionid=311B87D971877433231F59B066A11F18.c2.iopscience.cld.iop.org January 10, 2017.

[6] Villar-Fernandez, M. A. & Lopez-Escarnez, J. A. (2015). Outlook for Tissue Engineering of the Tympanic Membrane. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4627121/ January 10, 2017.

[7] MedCityNews.com (2014). A no-surgery solution for eardrum repair? Tulane team’s gel patch could be applied in-office. Available online: http://medcitynews.com/2014/04/gel-patch-replace-surgery-eardrum-repair/ January 10, 2017.

 





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