Eustachian Tube Dysfunction...surgical success

Hi Joyce,

I did a great deal of research about ETD to see what, if anything, was being done to 'cure' this dysfunction. (My illness began in late 2015.)  That led me to several articles about the balloon dilation...including a YouTube video of the entire surgery being done in Germany.  I have Medicare as my primary and my secondary is MPI.  There were no ENT physicians in my secondary who did this surgery in 2017 but I found one (only one) in my state of  California who does this procedure on a regular basis...Dr. Brian Weeks in San Diego.  Again...Dr. Weeks is not in my secondary insurance system so I knew that I would be paying some of this out of pocket.  I wrote to him telling him of the history that led up to the Eustachian tubes collapsing.  They scheduled me for a consultation visit in April of last year and two weeks later they called to tell me that I had been accepted as a surgical patient for both ears.  Since I had read blogs from others prior to flying to San Diego, I knew that they required a payment of $3,000 up front if they accepted you as a surgical patient (apparently this is always the case no matter what insurance you have), and during my consultation, they told me about the $3,000 payment.  Because of my insurance situation, I knew that this amount would be paid by me...not my insurance.  Dr. Weeks does this surgery in a hospital and I was there the entire day...with the actual surgery taking about 2-1/2 -3 hours.  The hospital and Dr. Weeks billed my secondary insurance...and Medicare...so I did receive notification of all of the charges.  The hospital charges were many thousands and apparently most of that was paid by Medicare.  Dr. Weeks is still sending out bills to MPI (my secondary) and to date they have paid almost nothing.  It has been almost 9 months since the surgery and I still have paid only a little more than $3,000 out of pocket.  Check with your insurance to see what they will pay.

Hope this helps. There are other doctors in other states who do the balloon dilation.  Check on the internet to find one close to you...and make sure you go to someone who does this procedure on a regular basis. I have read about people who did not do enough research before going forward.  IT IS NECESSARY FOR YOU TO HAVE A REALLY GOOD SURGEON!!  

Sincerely,

Jan Cavanaugh 

Hi Ajhf94,

In answer to your question, I am including  portions of my health file.  There was just too much information to attempt a short response.

Please allow me to briefly describe my latest health problem.  I was very ill for 20 months beginning in late 2015, and it involved my sinuses, lungs  and ears.  This illness included a severe overproduction of the mucous membranes. I was coughing daily...throughout the day because the mucous went down my throat and was deposited in my lungs. This led to infections in my inner ears and that led to both of the collapse of both  Eustachian tubes.  Life as I knew it stopped. 

2015/2017  HISTORY OF MY UPPER RESPIRATORY AND SINUS CONGESTION & EUSTACHIAN TUBE DYSFUNCTION 

January 2, 2016   Emergency Room    Extreme congestion. Coughing hourly...daily.

Promethazine-codine syrup    Levofloxacin 

January 6, 2016    Dr. Adbol Zia, Internist  Extreme congestion.

Fluticasone propionate nasal spray    Symbicort inhaler 

March 7, 2016    Emergency Room  Extreme congestion.  After being there for over 3 hours and many tests, I finally saw a doctor who kept asking me if I had ever had Vertigo.  INCORRECT DIAGNOSIS  No medication 

March 8, 2016   Dr. Zia  Extreme congestion.

Levofloxacin   Symbicort inhaler 

May 30, 2016  Appointment with Dr. Zia.  Extreme congestion.

Levofloxacin    Symbicort inhaler    Zyrtec

I already had three antibiotic pills from a previous prescription so I started those the previous Friday.  With the new prescription I took 13 days of antibiotics. Dr. Zia also suggested that I try over the counter Zyrtec which I began taking.  The congestion began to break up during those 13 days and I was able to cough up and blow out a thick yellow mucus. 

June 6, 2016  On June 6 I was blowing my nose really hard trying to dislodge mucus when something happened to my right ear. I knew immediately that something serious had occurred. I equated it to having my head in a barrel…but later I equated it to being under water.  Blocked right ear…pressure in head…24 hours a day. 

June 13, 2016   Linda Abrams, Nurse Practitioner MOTION PICTURE INDUSTRY

I made an appointment at Motion Picture (my secondary insurance) with my Nurse Practitioner, Linda Abrams, to get a referral. That referral was to Dr. Natalie Kadin, ENT in Thousand Oaks.  I called as soon as I got home to make an appointment.  Unfortunately I could not get in until August 31 which was 2 ½ months away. 

June 15, 2016  Dr. Zia  Extreme congestion and coughing.

Methylprednisolone

In the meantime, I was so distressed by the distortion and added loss of hearing that I made another appointment with Dr. Zia, telling him about the ear problem that had occurred a few days before when I was blowing my nose.  He gave me a 6 day prescription for steroids. (Methylprednisolone)  I asked him for a local ENT referral. He referred me to Dr. Martin Wareham at the West Coast Hearing & Balance Center in Simi Valley.  

July 1, 2016  Dr. Wareham, ENT

On July 1, I saw Dr. Wareham. I told him that I was there because of something that had happened to my right ear when I was blowing my nose. I gave him a brief history of my sinus and upper respiratory congestions since December of last year (2015). He vacuumed my ears removing a small amount of wax. He then administered a local in my sinuses and preformed a nasal endoscopy to see if I had a sinus infection. He pronounced me free of congestion. I repeated again, that since I had been taking an antibiotic from May 28-June 10, the infection and mucus had already broken up and I had been able to expel most of the mucus from my chest and sinuses. I explained again that I was there because of my ear.    

July 8, 2016   Dr. Wareham,  ENT and Hang Lam, Audiologist

Dr. Wareham scheduled a hearing test with Hang Lam, the West Coast Hearing & Balance audiologist. (I had had my hearing tested a few years ago because I was experiencing tinnitus.  That diagnosis was moderate hearing loss in both ears.) 

Hang Lam gave the results of her tests to Dr. Wareham.  My ETD had already occurred the previous month before this test was done. I had become quite efficient at researching both the mucous membrane problem and, now this ear problem.  Before my appointment with Dr. Wareham, by using the symptoms that developed regarding my right ear, my research pointed to Eustachian Tube Dysfunction as being the problem.  And after Dr. Wareham looked at the results of my hearing test, he diagnosed my ‘under water’ syndrome as Eustachian Tube Dysfunction.  He told me that there was no way to fix this condition and I had read this same prognosis on more than one medical website.   For the continuing sinus problem he suggested that I take Sudafed. 

July 8, 2016    I stopped taking Zyrtec and began taking Sudafed.  

August 24, 2016   After researching ETD, I decided to start taking IBuprofen, 600 mg. twice a day. 

August 31, 2016   Dr. Natalie Kadin, ENT     MOTION PICTURE INDUSTRY

Eustachian Tube Dysfunction related to extreme sinus congestion.  This was my first appointment with Dr. Kadin.  She did a nasal endoscopy which showed swollen sinuses and right Eustachian tube causing Eustachian Tube Dysfunction on the right side.  She prescribed Astelin and told me to continue with the other prescription nose spray and the two over the counter allergy medications.  She ordered a CAT scan.  I stopped taking Ibuprofen. I again added Zyrtec.  (Fluticasone propionate nasal spray,  Astelin nose spray,  Sudafed,  Zyrtec) 

September 8, 2016   CAT scan at Renaissance Imaging Center in Westlake MOTION PICTURE INDUSTRY 

September 22, 2016   Dr. Kadin     MOTION PICTURE INDUSTRY

Amoxicillin-clavulanate

Second appointment with Dr. Kadin  She showed me my CAT scan and said I had an impacted maxillary molar and possible associated cyst which were causing the ongoing infection of the sinus cavities and the congestion and swelling of the right inner ear and Eustachian tube.  Recommendation:  See an oral surgeon. She gave me a copy of the findings of the CAT scan and said to have the oral surgeon FAX her if he needed further information. She gave me a new prescription of an antibiotic, amoxicillin-clavulanate, to be taken for two weeks.  She also said to continue with Fluticasone propionate nasal spray, Astelin nose spray, Sudafed, Zyrtec. 

September 28, 2016   Donna Flores, RDH & Robert Bankhardt, DDS

Regular dental cleaning by my hygienist, Donna.  I had brought my history of these medical problems, plus a copy of the CAT scan results prior to this visit, so that Dr. Bankhardt was informed of why I required a referral.  I talked to Dr. Bankhardt this day during which he gave me a referral to Dr. A. Scott Bennion. 

October 12, 2016   A. Scott Bennion, D.D.S. MOTION PICTURE INDUSTRY DELTA DENTAL

Initial meeting to discuss surgery for impacted maxillary molar and related cyst. 

October 19, 2016  Dr. Bennion’s Simi Valley  office MOTION PICTURE INDUSTRY DELTA DENTAL

Amoxicillin and Oxycodone-Acetaminophen

I filled the prescriptions and began taking the Amoxicillin immediately. Signed papers and prepaid upcoming surgery 

October 20, 2016   Dr. Bennion’s Westlake office MOTION PICTURE INDUSTRY DELTA DENTAL

CT SCAN of teeth     Surgery date is October 28 at Westlake Surgery Center 

October 21, 2016   Dr. Zia’s office to drop off pre-surgery test orders along with my history of current problem plus CAT scan findings from Renaissance Imaging 

October 21, 2016    It has now been 20 weeks that I have had the Eustachian Tube Dysfunction in my right ear, 24 hours a day…and over 11 months since I began to experience extreme sinus and upper respiratory congestion.  When I finished each prescription of antibiotics, the congestion would begin to build up again until I needed to again seek medical help. 

October 26, 2016   Dr. Zia

Pre-surgery tests 

October 28, 2016    Dr. Bennion     MOTION PICTURE INDUSTRY DELTA DENTAL

ORAL SURGERY at Westlake Surgical Center 

November 4, 2016    Dr. Bennion    MOTION PICTURE INDUSTRY DELTA DENTAL

Post-op appointment  Discussion of lab report which showed no cancer cells and no infection.  Gave me a prescription for an anti-biotic in case I need it in the future. 

November 7, 2016    Dr. Zia

Symbicort inhaler

Discussion of chest X-ray which showed that the original mass was gone, but something else showed up and needs further tests.  He wrote a prescription for a CT scan.  He also said to start taking Musinex and gave me another inhaler to be used twice a day…two puffs each time. 

November 8, 2016    CT Scan at Aspen Center 

November 10,  2016   Dr. Zia called re CT scan…no problem. 

November 16, 2016    Dr. Kadin MOTION PICTURE INDUSTRY Oral surgery did not work  Still coughing…still problem with mucus.  She said sinus surgery would be the next step. 

November 18, 2016    Dr. Bennion  MOTION PICTURE INDUSTRY DELTA DENTAL Last post surgery appointment and sharing with him Dr. Kadin’s suggestion for another surgery 

November 21, 2016   Dr. Zia  E-mail from Kadin 

November 23, 2016    Dr. Zia   To order pre-op tests. 

December 6, 2016    Dr. Kadin  MOTION PICTURE INDUSTRY  SINUS SURGERY at Los Robles Surgical Center.  E-mail  from my Surgeon, Dr. Kadin, “I didn’t find fungus, but I did find LOTS of chronic sinus disease and polyps!” 

December 14, 2016   Dr. Kadin  MOTION PICTURE INDUSTRY  First visit post-surgery  I was still too swollen for her to clean out the nose and sinus. 

December 21, 2016  Dr. Kadin  MOTION PICTURE INDUSTRY  Second visit post-surgery   She was able to clean out the nose and sinus.  Referral to Dr. Arthur Wu re Eustachian Tube Dysfunction 

Over the month of January 2017, my coughing and spitting up of mucus may be somewhat better…only because at this time it has not yet progressed to the point where I need antibiotics. I must interject here though that I have a general feeling of not being well every day.  I am still coughing every day and am still expelling yellow mucus.  And, of course, my ETD has greatly impacted the quality of life. 

February 6, 2017  Dr. Wu

Budesonide to be added to sinus rinse

Dr. Kadin referred me to Dr. Wu as she said he does the balloon dilation surgery.  This doctor’s office was quite a distance from me but because I had done considerable research about this procedure, and because I have had 27 medical related appointments in the last year, I was desperate to try another procedure to hopefully fix my ear.  When I met with Dr. Wu, providing him with a written history of both the mucus production and the Eustachian Tube Dysfunction, I briefly verbalized this history.  I then said that Dr. Kadin had referred me to him because she said that he does the balloon dilation surgery.  Immediately he went from my mentioning that procedure to wanting to do the ear tube insertion. That led me to believe that the Balloon Dilation is probably not performed by him very often IF EVER.  I have also read a great deal about the tube procedure, including many blogs by patients who had this done.  The reports were not good in most cases and I did not find one ETD patient who was cured by the used of tubes in their eardrums. Dr. Wu did an endoscopy.  He also looked into both ears and performed a tympanogram to check  whether or not there is fluid in the inner ear.  At that point he said that I do have fluid in my inner ear.

I had told him that Dr. Wareham in Simi Valley had Hang Lam, the Audiologist associated with his practice give me a hearing test, but Dr. Wu wanted his audiologist to do another test which we did.  

Dr. Wu called me the next day and said that after looking at my hearing test he diagnosed me as having Eustachian Tube Dysfunction.  He wanted to schedule me for the tube procedure, but I told him that since ENTs near me do that procedure as well, I would not be scheduling another appointment with him.  I thanked him for his information and suggestions.

When Dr. Wu did the endoscopy he said that I had considerable mucus in both sides of my nose.  I asked him what the cause might be to which he said “inflammation”. I then asked what might be causing the inflammation.  He named several possibilities, one of which was allergies.  Since I have had significant allergy symptoms several times in my life  (although never producing my present symptoms) …but years ago I went through the skin tests resulting in shots. Since I frequently have difficulty breathing through my nose, and since there might be an allergic relationship to my sinus problem, I decided to get a referral to an allergist.   

Dr. Kadin who performed my sinus surgery, gave birth the end of January and will be out for 4 months, so I asked her to give me another local ENT referral.  That doctor is  Dr. Michael Holliday, ENT (UCLA). I have made an appointment with him but could not get in to see him until April 11. 

February 17    Dr. Andrew Pham,  Allergy specialist   MOTION PICTURE INDUSTRY

Ipratropium Spray   (New)

New drug protocol:  Sinus rinse twice a day, Fluticasone once a day, Ipratropium 1-4 times a day, Zyrtec 10 mg once a day

Dr. Pham said that it is possible that the overproduction of mucus could be due to an allergic reaction.   I will be undergoing skin tests March 27. 

February 28   Dr. Brian Weeks ENT (mail communication)

I had been doing research regarding treatment for ETD and discovered that there is a fairly new surgery called Balloon Dilation that is producing a 70% success rate.  I inquired with MPI to see if there were any ENTs who performed this surgery.  There were none.  I then put together a letter along with the history of my illness and sent it certified to Dr. Weeks, asking to get an appointment for a consultation. 

April 7    Dr. Andrew Pham  MOTION PICTURE INDUSTRY

Skin Tests   Blood tests using 35 antigens 

April 11   Dr. Holliday ENT    MOTION PICTURE INDUSTRY 

To discuss balloon dilation vs. tympanostomy tubes 

April 18   Dr. Brian Weeks ENT

I flew to San Diego to have a consultation regarding the Balloon Dilation surgery 

May 3   Dr. Brian Weeks (phone communication)

I received a phone call from Dr. Weeks office telling me that I had been approved as a surgery patient to have the Balloon Dilation done on both ears.  The surgery date would be July 13. 

July 5   Dr. Zia

This appointment was to have Dr. Zia order and oversee my pre-op tests ordered by Dr. Weeks for my upcoming surgery on July 13. 

July 12    Dr. Brian Weeks

This appointment was to do pre-surgery tests…including a CD scan of my head. 

July 13   Dr. Brian Weeks

BALLOON DILATION ON BOTH EARS AND CONSIDERABLE WORK ON ALL SINUSES

This surgery was done at Alverado Hospital in San Diego under a general.

Actual Procedures:  Bilatereal Submucous Resection and outfracture inferior turbinates, Bilateral Nasal endoscopy with sinus lavage, bilateral endoscopic ethmoidectomy, bilateral endoscopic middle meatus antrostomy, bilateral endoscopic sphenoimotomy, bilateral endoscopic frontal sinustomy, Eustachian tube dilation, stealth with headframe. 

I did not discern an immediate change in how my Eustachian tubes were functioning although I knew that that was not unusual as this surgery is intended to give the Eustachian tubes a nudge so that they will begin to function as they were designed.  THEN ON DAY 11, BOTH EARS POPPED AND BOTH EUSTACHIAN TUBES OPENED.  Clearly the surgery worked for me.  My ears have worked since that date, July 22. Over the next few weeks there was some popping and clicking but the Eustachian tubes have continued to work.  My senses of smell and taste have returned.  I am once again on the road to a good state of health and this would not have been possible without the Balloon Dilation surgery.  

July 31   Dr. Andrew Pham  MOTION PICTURE INDUSTRY\

Stop Sudefed   Continue with Zyrtec

Began allergy shots    Dr. Pham and his expertise has led to my greatly improved mucous membrane situation. With much less mucus production, my coughing has considerably lessoned.  He provided me with a great deal of information regarding how I could improve my environment and I have begun taking his advice and will continue to change my home and lifestyle in ways to avoid the antigens that very possibly caused this illness. 

Alhf94: Sorry to have included so much information (taken from my internet folder), but this will enable you to see what I went through to get to where I am now which is a much healthier state.  In all I saw 5 ENTs, 1 Internist, 2 Audiologists, 1 Oral Surgeon and an Allergist.  You can see that I took numerous medications...of which, the antibiotics worked the best when my sinuses, lungs and ears became too infected.  The first two surgeries did not help me at all...because we had not yet found the real cause.  Early on I suspected it might be severe allergies, but you can see that it took me many months before I finally saw an allergist.  I am taking allergy shots weekly...probably for a few years...and I am doing all I can to rid my home environment of those things that held the allergens making me sick (ie:  carpet, drapes, etc.)  My sinuses are nearly symptom free as are my lungs.  And my Eustachian tubes are still working as they were designed.  I am more careful when I blow my nose, I am taking antihistamines. I have a lifelong history of allergies, but this was the first time that they threatened to end life for me.  I was determined to search until I found answers.  And I'm grateful for my doctors...and my computer!!! 

Again...sorry for this very lengthy answer, but hopefully it will help you!

Most Sincerely,

Jan Cavanaugh

Symptoms of sinus and upper respiratory congestion:

Continual drainage from mucus membranes most of which went down my throat.  I could feel the mucus in back of my nose and in my throat which required me to cough it up and out.

Coughing and spitting up of mucus daily    Since the sinus surgery on December 6,  the coughing still occurred daily.

Coughing diminished.   I pulled up my bedroom carpet and hallway carpet in April and my coughing is considerably diminished.

A general feeling of not being well

 Symptoms of Eustachian Tube Dysfunction:  Both Ears

Similar feeling to pressure in the ears when flying, only much worse

Stuffed feeling and pressure in the ears and head                                                                       

Hearing was impaired in that all sound became noise…both ears

Sense of smell was completely gone

Ability to taste was completely gone

Equilibrium was impaired

Hearing my voice inside my skull as if I was under water… making it very unpleasant to talk

Magnification and distortion of body sounds such as chewing and brushing my teeth, & when I turned my head, I could hear the crunching of muscle/tendons/bone

Hi Diana,

Glad to see that you are still a part of this sharing of information!  I want you to know that you are the main reason that I contacted Dr. Weeks.  I will be forever grateful to you.  I have never watched the show The Doctors but when I found out that you and Dr. Weeks had been guests, I watched that segment on YouTube.  Then I watched the entire surgery on YouTube...done in Germany (I think). I flew to San Diego by myself (I live in Ventura County in CA.) for the consultation.  When they accepted me for the surgery, my boyfriend and I drove to San Diego...since I knew I would need transportation to and from our hotel and the clinic and hospital.  Anyway, prior to,  I read numerous articles written in ENT publications about studies that had been done...and about doctors in the United States who were currently doing the surgery.  Anyway, I want you to know how thankful I am to you for sharing your experience.  I had already decided to have the surgery done...even if I had to travel to another state, or country.  But I ALSO WANTED AN EXPERIENCED SURGEON!!  I believe I recall you telling readers that this was a really important factor to be taken into consideration.  

Thanks for the information about the Facebook group as well.

Sincerely,

Jan Cavanaugh