How were you told about your AN?

[Sammict]

Hi

I had my MRI on a friday afternoon when I got home my doctor left me a message to call him as soon as possible. He left me the message at 330pm my MRI was from 300to 345pm. I was still having my MRI when they called him.

I called him back as soon as I got home at 415pm he had left for the weekend. I asked his service to get a hold of him he left me an urgent message on my machine.

I didn't hear from him until Monday Morning at work. That's when he told me I had an acoustic neuroma and that he could n't treat me he gave me a doctor to call. But i was devistated finding out at work was the worst. I am bank manager I have 17 employees for all of them to watch thier leader fall apart was more than I could handle.

I ended up working 1/2 a day and went home made phone calls and found this web site it was a life savor for me. 

[mom of AN pt.]

My daughter was only 15 (3 years ago) when we went to an Ear Nose Throat specialist because she was having balance problems and some hearing loss.  Our General Practicioner more or less said "everyone gets dizzy when they stand up to fast" etc...but I didn't believe her issues were normal so consulted a EMT specialist.  He in turn somewhat dismissed her symptoms, but after I pursued it, she was mis-diagnosed Meniers Disease. She went on a low salt diet etc...but the dizziness got worse.  Finally she got an MRI.  Well the MRI facility was all smiles and so I though all was well.  I called my ENT doctor to confirm this and he said he was going to refer my daughter to another specialist.  OK..this was not sounding good.  The ENT also would not give me much information just enough to make me melt down and consult the internet as well....so I sympathize with your situation, sounds so familiar.

Ultimately I rejected the ENT's referal and decided on the physicians at the University of WA Medical Center.  A consult with them revealed they performed this surgery approximately twice a week, every week.  So I knew I had found an experienced team. 

My daughter had a very large tumor, it took two surgeries to remove. She lost her hearing in one ear sadly, but her face is totally normal looking.  It's now three years later...she just had an MRI the other day and there is no growth. 

At the time of diagnosis I was a basket case, but honestly it's taken 3 years to finally recognize that although its nasty thing to deal with...Acoustic Neuroma's are benign tumors.  My daughter is doing awesome, she is 19 now, a student at the University of WA...beautiful and smart.   

I continue to hope that someday her hearing might be restored (even a little) without the use of the a device...that medical research will find ways to generate nerve cells ...etc...I know its a long long way off but I still hold on to the hope.  I also know that the BAHA is supposed to be great so that can be an alternate when she is ready for it...
Debi,
Mom of Amanda.

[Gloriann]

After having hearing loss in one ear from 1974-2001, and other symptoms developed during the years 2000 and 2001, my family doctor set up the MRI to be done on a Friday morning, May 4, 2001.

There was severe facial pain on that side, mostly in my jaw, so I suspected a TMJ problem.

After my MRI was done, I met my husband for lunch, then drove home and there was a message on my answering machine from my doctor's office asking me to come in. I figured they must have found something, to call me so quickly, so I drove to his office.

The doctor (my family physician) came in with the films to show me the 4 cm tumor. He said "you have a tumor". I was really shocked and said, "you're kidding"? I don't know why those words came out of my mouth. It's sort of comical now, as I think about it.

Reality set in as I drove home and stopped by my mother's apt to tell her. I broke down and cried while tring to talk.

I think they way I was told was fine. I am glad that I did not carry the films to the doctor's office or read the report on the way. My doctor's office was right around the corner from the hospital where the MRI was done. I think it seems unusual for a patient to bring an MRI to a doctor, but this is done now when I have my follow-up MRI's done. They give me the films and report to take to my doctor and I think it is because he is in another city.

[solecleansing]

In July 2007, I realized I had hearing loss and scheduled an appointment with an ENT.  At the time of my visit the audiogram showed that I had hearing loss only in my left ear.  I think the ENT gave me a cortizone pack and said to come back for another test in a few weeks.  When I went back the hearing loss was a little worse.  Since I still had 50%+ hearing in my left ear she said I could just monitor it or have an MRI.  My choice.  So I followed my gut feeling and had the MRI.  I sure am glad I did.  She called me the next day to tell me I had an Acoustic Neuroma.  That day my life changed.  I made an appointment with a neurologist and he explained thoroughly my options and I chose surgery.  Surgery was performed on November 8th, 2007 and left me with single sided deafness and balance issues.   Looking back I realize that I might have had some symptoms; suspectedTMJ , lots of ear pressure/fluid, and was becoming very clumsy. 

[cheza]

A little late to the discusion but.......

Things happen a little slower here in england, our health system has its problems but is one of the best in the world (or so I think, speaking from experiance) I like many of you had loss of hearing so saw my GP, thinking my ear just needed a good clean out, but you all know the story, nothing there, my ear was a clear as a bell, so on to the ENT department this was about 6 weeks later ( trust me thats quite fast really) this was june

ENT then sent me for.......yes you guessed it MRI  this took about 8 weeks the appointment was end of august, I was told I should expect to see the results in about .....yep, 6 weeks, ok I thought nothing to bad then, so of I trot not really concerned, they mustn't have found anything.

 1 week later i get a phone call, "Mrs Bennett did you know you had an appointment today with the ENT doctor" "no" I replied, "well you should have had a letter" the lady said "no I haven't had anything, do you know there is a postal strike at the moment" I replied, so the lady on the other end of the phone made a new appointment for 3 weeks time,now feeling slightly anxious if you get phone calls that quick something is usually wrong.

So I waited for the day to come, my appointment was at 11:30am so I went to work only to find that my memeber of staff who I really needed to be there was sick and couldn't come in work, another appointment canceled, by now I'm feeling a little worried,  It was now the end of september.

I came home from work one day, within minutes of being home the phone rang, it was manchester royal  hospital, they made me an appointment for 4 days time as it was very urgent that they speak with me, if I wanted any information in the meantime I was to contact my GP who had now been sent all the information , as you can imagine I phoned my GP immediately, I went to see her the next day.
She told me I had a growth, where abouts it was and that i would have to have surgery to remove it, she also told me it was quite a large one but she didn't know the exact size.

When I finally got my appointment with Proff Ramsden it was the 4th October 4 weeks later I was in surgery (now that was fast).

The rest i guess is history, I felt the doctors involved handled the situation very well and with excellent bed side manner, it was just the unfourtunate events leading upto getting that appointment, which was no-ones fault but fate's

Cheza XxX