Ear problems all my life

Out of frustration for having chronic ear problems all of my life, I have created this blog. My hopes are that I will find some others out there who have the same problems as I do and we can share information.

Lets start with the background: I am 33 years old and have had chronic ear infections all of my life, starting when I was about 3 years old. I had my tonsils and adenoids taken out at that point and still had recurring infections.

At 5 years old I had my first set of ear tubes (the old white simple kind). They worked for a while, but I still had ear infections about 2 times a year, mainly in my right ear.

Lets skip forward: 5 sets of tubes and 12 years later, I was still having problems. I have one of the top ENT (Ear Nose Throat) specialists in the USA -- they cannot seem to figure out what the problem is. However, one of the doctors in the practice decides on a whim to do a nose scope. He discovered "You never had your adenoids taken out!" -- (I beg to differ as does the Pahtology report ;-)). So, they remove my adenoids...AGAIN. Apparently I am one in a billion whose adenoids grew back. Great -- that should solve the problem, right?

WRONG! A set of long term tubes that stayed in about 3 years would hopefully help. While it did lessen the frequency and severity of the infections, they didn't stop.

Lets forward another 11 years or so. Each year I get about 1-3 severe infections in my right ear that usually result in a ruptured ear drum. I sort of know the drill, so I simply call to my specialist or my ear doctor and get the antibiotic, deal with the horrible pain and pressure for about a week, and I'm off on my merry way again. Only two problems: 1) I'm a music teacher and performing musician who relies solely on my ears as part of my profession; and I"m an oboist/English horn player at that -- which for those that don't know, requires a lot of pressure to play. 2) The infections keep coming back about 2 months apart. ( I sound like I'm having contractions -- "the infections are two months apart Doctor!")

So, needless to say I am a mess. I know I could be dealing with a lot worse things, however this is getting quite frustrating that this is a problem that plagues many children and teenagers and I have always been told I would grow out it. According to the experts who say this, I ask..."When am I going to grow out of it? At 50?"

So, this brings us to January of this year. After four infections and persistent fluid in my ears, they performed a bilateral myringotomy in both of my ears, in the office (that was fun!). After suctioning the right ear for about 13 minutes, my dealing with the uncomfortable-ness and slight pain, the doctor says, "I still don't have everything and I have never seen fluid this thick in anyone, ever! Are you sure this hasn''t been in here for a long time?" My thought: Possibly, but I'm not sure.

So, two weeks later I am checking into the surgery center downstairs to have tubes put in to my ears. After the whole deal is over (which wasn't bad at all I might add....the sleepy medicine was fun!) my right ear has a normal ventilation tube in it. All is well -- ear is clear. Doctor tells me that this was the thickest fluid he has ever seen and cannot even understand how that much fluid was inside of the ear drum. I remind him that he did the same suction and had the same comment two weeks ago. He is amazed! All is well, right....ha ha, do you know better?!

I come across this nasty sinus infection that is traveling the eastern US and four antibiotics later am finally rid of it. In the midst of it however, exactly ten days after the tube is put in my right ear, Mr. Tube is pushed out due to excessive thick ear fluid. Long story short -- I am scheduled for surgery again three weeks later to have a "long term" T-tube inserted (I have had this twice before and it did work well, for the most part).

This brings us to last Thursday. Since I am able to see the Nurse Practitioner, she tells me that I seem to be re-defining what is normal in ear problems, especially into adulthood, so I know my body best, and if I notice anything abnormal, call her right away. Last Thursday I called her with strange things going on in my ear.

Result: Long term tube has three flanges to keep it intact on the inside of my ear drum. Apparently, the thickest fluid she has ever seen in anyone (dejavu!) is pushing the tube out again. 1 of the flanges is out. The doctors assistant comes up and removes the tube, they suction my ear drum, and she puts the tube back in (while I'm awake). They both are amazing...really. They try to be as gentle as possible and they do a great job. Both exclaim that they have never seen this much fluid in someone's ear (after only two weeks again) and have never seen fluid so thick. They both think the next step might be to move to a titanium tube that can stay in longer and is more durable and less able to be pushed out as easy. They also set me up for a CT scan of my sinuses, an appointment with a world-renowned sinus specialist, as well as extensive allergy testing to see what is causing the fluid to be so thick.

Fast forward again to today: Everytime I swallow, move my face -- any part of my face, I can feel the tube in my ear moving around. It has started to work its way out again, worse than last Thursday. We shall see what tomorrow brings....if the tube stays in that long! It is very annoying to hear the tube moving around on your ear drum and feel it being moved by the massive amount of fluid behind it.

So, I have noticed there is very little information out there about adults with chronic ear infections and ear problems, or even adults with tubes. I'm sure there are more out there than just me, so please feel free to jump in and share your story. I will keep you updated on what is happening with the problem that I am told I can grow out of! ;-)