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Ear, Nose & Throat Message Board

Ear, Nose & Throat Board Index

Hi Jennifleck, thanks so much for starting this thread. I didn't realize how many peoples lives are affected by something so simple as ETD. My story is almost 4 yrs long, so i will try to condense it. My problem started as a bad smell, no other symptoms. I own a dog grooming salon and have groomed dogs for 26 yrs. I knew the smell, it was the smell dogs get in their infected ears, Pseudomonas Infection. I took this info w/me to my first ENT visit (that was the 1st of many looks i got like i was crazy, i'm sure you ALL know that look). I had FESS sinus surgery, but within 2 weeks the stench was back, along with this feeling of water in my head and pain directly behind my nose. I was told the surgery went perfect, so i can't have pain....a year and a half later i was finally diagnosed by a simple, in office mucus test with Pseudomonas Infection! I spent the next year and a half going to 31 diff drs trying to get rid of it. Infectious disease, neurologists, neuro-opthamologists, pain drs, ENT's, my gynecologist, naturopathic drs, chiropractors etc. I left so many drs office's crying hysterical. I had every test available, MRI's, CT scans, EEGs, sleep test, bone scan, body scan. I had nerve blocks in my face & neck, and was on very strong pain meds. Nothing helped. We were chasing the pain and all my symptoms. I kept asking, what is behind my nose that could be hurting so much? And why do i feel underwater all the time. No answer. I spent 90% of my life on the couch crying. I lost 35 lbs and became extremely anemic and suicidal. I hurt too much to even eat. No dr gave me any hope. I knew the first step was to get rid of the infection. Then see if i still had pain. After my 3rd round of IV antibiotics put me in the hospital for 4 days, my last ENT told me i had become his "guinea pig." He didn't know how to get rid of this infection. Luckily, i saw a dr on TV who was doing a new procedure for sinus infection. I flew to San Diego, had the surgery and my infection was gone. NO more stench!! But the pain/pressure was still there, along with "clicking" every time i swallowed like my head was full of water. I called my new dr and told him my symptoms. He said "that sounds like your eustachian tubes". Just like that-7 ENT's later i finally hear-Eustachian tubes. I googled it and there was a man with a fish bowl on his head. That was me! We tried sprays and forcing air into my tubes first. Then he told me about a new procedure that dilates your tubes and opens them up. He said it's very new, ins probably won't pay. I told him I would fly to China if i had to, to get my life back! My ins did pay. The minute i woke up, it was like someone had "popped" my head. I took a drink of water and my ears didn't click. I realized then, that my hearing had been impaired-i had just gotten used to it after 3 yrs of my tubes being stuck. I came home and was "me" again. My husband jokingly asked where my "off" button was! Unfortunately two weeks later i got a bad cold/cough and my tubes closed again. I am back on sprays. My dr is very positive they will open back up. But at least i [B]know[/B] there is an answer so i'm not depressed anymore. I just e-mailed my dr asking him if my muscles that open and shut my tubes could have stopped working, since they weren't working for 3 yrs, and only had two weeks working before i got a cold and they closed up again. If i have to do it again, i will. It was simple and pain free and worked. My dr said they have only done a few hundred in the country, but no one has had to have it re-done, so that's positive. There is hope and new technology out there! Don't get discouraged!!

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