So, I went to the ENT yesterday and got a series of tests done. Amazingly, I did MUCH better on the hearing test this time. My hearing fell "within normal", and I was really happy about that! There is a slight loss in the left ear, but still within the normal range.
After the hearing test, I met with Dr. Mitchell. He swung open the door, smiled and stuck out his hand to shake mine. The charm was oozing off him and I was immediately weirded out by him.
First of all, he he asked me, "So, what's going on with your skin?" I told him to look in his notes, and he would clearly see, that I have Neurofibromatosis. (Grrr....I don't know about how YOU would feel...but that just rubbed me wrong. I wanted to chime back..."hmm, what's up with the extra white teeth and fake tan?" .. but I was good)
I explained my symptoms to him and tried my best to be REALLY clear in what I am experiencing. For those that don't know, here is what is going on: For quite a few years, I have had this REALLY annoying symptom, when I hear loud noises. It's even triggered by my own voice. It has gotten progressively worse in the last year or so. What I get is crackling/popping, almost like a "blown speaker" noise. The feeling has my plugging my ears whenever the noise get to a certain level ( a level that would be normal for everyone else )
Dr. Mitchell didn't really seemed concerned at all. He examined my ears, nose and throat, and offered his expert advise to "wear earplugs". I sat there, and probably looked like a deer caught in the head lights.
A few moments went by, and I saw him scratching notes in my chart. "NO!"....."That's not good enough!" I told him. "You try living life, and avoiding noise. I am a mother....I will not walk away today with you telling me to avoid noise and wear ear plugs!"
I mentioned to him something I found on google....(and there's one thing I have learned, never ever mention to your doctor that you googled your symptoms, because it never ends well, but I was desperate!)
Tensor Tympani Syndrome is what I mentioned to him, and he just looked back at me and shook his head. "That's kinda rare, and I've not seen it here at this office." (FIGHT KRISTI FIGHT) So I asked him, "How many NF patients do you have?" "A couple", he answered. "Hmm that's kinda rare too, and here I am sitting here with NF."
He just looked at me. I see he is not used to his patients fighting so hard. I was NOT going to leave without SOMETHING. I have been pushed around by so many doctors, who felt THEY had my best interest in mind. BULL! I'm done with that!
"Well, I'm the "throat" guy, I will "toss this around", with my Ear guys and see what they have to say". THROAT GUY??? "Well get me the EAR guy! I have issues with my EARS, I'll wait here as long as it takes". That didn't work. Dr. Mitchell promised me that he would talk to the other doctors about what's going on with me and give me a call.
I left pissed. I didn't get my answers. Just more questions. But I bet Dr. Mitchell won't forget me. I left an imprint on his day....and I truly hope he consults with the other doctors, or I may just have to make another appnt and grace him with my presence.
NEVER NEVER NEVER NEVER NEVER GIVE UP!