New member questions

[jss]

Hi!  This is such a great site, very helpful.  I just had an MRI last Friday without contrast, which now bothers me because I'm afraid if they don't find anything I will worry it was missed because no contrast was used.  I almost did not even get an MRI, I had to insist on it, my ENT said no twice before giving in.  My ENT claimed my left sided hearing loss was hereditary after I said I have no relatives with hearing loss.  I am only 31 and that seemed perfectly reasonable to him to have hearing loss at my age!  This all started 5 years ago after I moved across the country and my ear felt full and plugged up after the trip.  Doctors said it was allergies for 5 years throwing everything at me, including every nasal spray on the market in hopes it would unplug my ear. This symptom has been persistent for the whole 5 years. They did do a hearing test 5 years ago, which showed mild high frequency hearing loss in my left ear, but I did not find out till my recent hearing test when they compared the 2 and it showed worsening hearing loss in left ear.  About 1 and 1/2 years ago, I started having ringing in my ears, both ears.  I have had occassional pain in my left ear and more headaches as of the last 3-4 months.  Also, just in the last 3-4 weeks I have had left eye lid twitching which I did not realize was a symptom until I read this forum.  I have also had very infrequent dizziness as if I am spinning, which has worsened in the last 6 months.  Anyway, so I am very scared and it is taking forever to get the MRI results back, it has been 6 days since I had the test, which I know isn't forever, but it sure feels like it.  Now from what I have read, I should have had contrast done so I worry about the accuracy of the test and don't know if they'll order another. Guess I'll wait and see what the results are.  Besides getting a second opinion, which I certainly plan to do depending on the results and getting a different ENT (the one I saw was about 70 and did not seem to know what he was talking about) do you have any suggestions for me?  Am I just worried for nothing and it may be something minor?

[Desilu]

Dear Jss,       By all means get a second, third and forth opinion. Do your research, ask questions, get answers, if you don't, it's time to move on to another doctor. Find a doctor you are comfortable with, you are putting your life in his hands. You may not even have an Acoustic Neuroma. Research until you can't research anymore. There are many of us on this web site that are more than happy to help out. Most of us have already had surgery or gamma knife. We are here to support each other. If there is anything that I can help you with please email me. Ann

HEI July 26, 2005
5mm x 8mm left AN
Dr. Brackmann & Dr. Hitselberger

[Battyp]

Hi Jss,
  My heart goes out to you!  My doctor told me I had a viral ear infection and it would take 6 mos to a year to clear up.  Since my dad had had something like this it didn't sound unreasonable to me.  In the six months I lost 50% of my hearing, wound up with the balanace issues and had to make a rush decision in regards to surgery as my brain stem was twisting due to the pressure the tumor was exerting.  I woke up with a migraine everyday for months and was told it was all due to stress..WRONG.  You know your body and don't stop until you are comfortable with your doctor and your diagnosis.  I had had several MRI's without contrast due to a neck injury and no one found the tumor. From what I've been told it was there just went unnoticed.  You should also get your MRI results back quickly.  My doctor sat on mine for two weeks before he told me the news ...Long story.  I found that when I picked up my MRI to take to another doctor what my ENT said was not consistent with the Radiology report.  Ask to see the report so you know exactly what your dealing with.  Please feel free to ask any questions.  I talked to two people before my surgery we have all had different experiences and used different doctors and I'm finding support and understanding is half the battle. 

My prayers are with you,
Michelle

[shoegirl]

Hi!

I would suggest calling the imaging center to see if they have completed your report, ask them to fax it to your Dr's office, mail you a copy, and then call your Dr. -tell them a fax is coming - ask if they will call you as soon as they get the report.   6 days is a long time to wait.  I hope that you are able to get some answers soon! 

Best Wishes!
Suzanne

[mellewis]

Hi JSS

Your situation sounds about identical to mine - my symptoms are about the same although my hearing loss is only very slight. I had a CT scan in August and the consultant said that he thought there was an AN but sent me for an MRI to be sure. I had mine last Friday too in London with contrast and am waiting to find out the news. It's a bit nerve racking especially when you know the report is sitting on the consultants desk but he won't look at it until tomorrow.

I agree with Desilu - do the research so that if the scan comes back positive, you will be able to have a more informed conversation with the consultant. Moreover, it doesn't matter where you are in the world, you are not alone.

All the best

Mel