ANA Discussion Forum
General Category => AN Issues => Topic started by: ces on November 27, 2007, 06:36:35 pm
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Hi,
I've been lurking here for a couple of weeks. I saw an audiologist (11/5) and she determined that I have significant hearing loss in one ear. The telephone was my impetus to have the tests done. I have an appointment w/ an ENT on Monday, December 3. The audiologist said I would probably need an MRI and that it was probable that I have a benign tumor. I naturally Googled that info and found this site (thank goodness!).
So, my question is, what should I ask at the appointment on Monday? Am I jumping the gun? All suggestions would be appreciated. I've been copying many of your comments to a document to take with me on Monday, but thought asking for your suggestions might give me a clearer idea. I realize I'll know very little until the MRI is completed.
I've read many of your posts and like other posters have stated, it's quite impressive. Your knowledge, caring and expertise are above the norm for many forums.
I live in a small town in New Hampshire. I'm female and 57 years old.
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Hi Ces, don't you leave that appointment without a referral to a neurologist or to an imaging center for an MRI. I don't care if you have to drop on the floor, and hang onto the furniture! A CT scan can miss an AN tumor, so throw a big ole temper tantrum for the MRI! And don't worry, there are a lot of over here on the other side of surgery who are doing great! So hang tough,
Let us know what your ENT says too. I'll be watching:-)
Yvette
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Ces
Ask about using steroids now to see if any of your hearing loss will come back. Depending on your situation it might be helpful to try, also if its not an AN, steroids could help if it is an inner ear viral infection....
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How nice!! Almost immediate replies - thank you.
The problem w/ steroids will be/is, I have diabetes - Type 1 LADA. And steroids are not good for PWD, persons w/ diabetes. I'm going to copy all the replies and take them w/ me to the appointment on Monday.
Thank you very much!
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Hi, ces!
Where in NH are you? I'm in Littleton, MA and there's a good representation here from us New Englanders. Are you seeing someone in NH or have you been referred down to the docs in Boston?
As others have said, the best definitive diagnosis for an AN is via MRI with contrast. MRIs done w/o contrast can sometimes miss the AN. You won't know for certain until after that MRI. But for the 3rd (assuming you won't have the MRI until after), be prepared to talk about any possible related symptoms - headaches, facial tingling, dizziness, balance, dry eye, or anything else that seems off. Even if it's not a recent development.
Once you have the MRI, you can ask more about exact size and location (if it is an AN). Those, along with your personal circumstances, will determine what you do next.
Good luck, and keep asking questions! Let us know how things go on the 3rd.
Katie
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I'm in Meredith, NH. I will see an ENT in Laconia.
Thanks for your responses!
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Ah, right near Keepsake Quilting - I know the area! ;)
Katie
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Yup - right down Rt 25 from Keepsake - and I have to be honest, I've never been in there - I'm not a quilter - and I haven't done any sewing since I was in college.
I'll let you know what the ENT has to say on Monday - to say I'm a complete, nervous wreck is an understatement...
Thank you for responding.
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Hi CES,
Ask about your audiogram. 1/ What % of hearing loss do you have? 2/ If he orders an MRI. DEFINITELY make sure it is with gadolineum (contrast dye). 3/ After the result are in ask if there is a tumor, where is located and how big. 4. If you are dx with the AN, the ask to be referred to an experienced Neurolologist. I am seeing one is Mass. and he is excellent. Good lluck and keep us all posted . I am having another MRI tom. ...allitle anxious when this time comes around ??? :-[ Most of all, try to stay positive and stay strong. Helen
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I have diabetes and I had a steroid treatment before I was properly diagnosed, and then I was on steroids for a week after my Gamma Knife treatment. Yes, the blood sugar went up and up, but my doctor said...oh don't worry about it...it's only for a week and it'll go down. So, it's a matter of what's more important I guess. But, this depends on your doctor and what they recommend. Yes, make sure you get that MRI with contrast. I had a cat scan first and my ENT said I had no tumor. HA HA.
Good luck to you
Sue in Vancouver
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MRI with contrast, when you get the MRI ask for a copy of your films, and have that follow-up appointment asap. The waiting is the hardest part for me.
Also, my only hearing loss was a little muffled sound on the phone...I thought my phone was going bad. LOL
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In addition to asking for a copy of your MRI for yourself. It's a good idea to ask for a copy of the report that goes with the MRI disk. You may have to sign for it. This was a suggestion given me and I've always been appreciative of it.
Best of luck.
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Thank you all for your considerate responses. The appointment is Monday, and at this point we're hoping we can even get there - the weather forecast is not so good.
I'll keep you posted.
Colleen
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So - at this time (9 AM) I should be sitting in the ENT's office - But - it's snowing... a lot - here in our neck of NH and I had to reschedule the appointment for next week. Will keep you posted.
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Hi Colleen, I hope you aren't spending too much time worrying-put the fears in a "box" and set them aside for a while, and enjoy the Christmas season and the beauty of your snowfall.
Yvette
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Hi CES- sorry you were unable to make your app't to the Dr. We also got slammed with snow . I live in Maine and I am also 57 years old and a RN. Keep in touch and stay positive. Have a wonderful Christmas. Helen
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Appointment #1
For the first appointment you will want to have done
* An audiogram (with ear pressure test) by the audiologist
* An MRI done first without contrast and also with contrast (done in the second half)
* CAT Scans are not as accurate
Appointment #2
“If� you have an AN tumor then you will be called in for a follow up appointment. At that point ask for a list of recommended neurotologists and neurosurgeons. You could also speak to a neurologist - but really a “neurotologist� will be more on the ball as far as Acoustic Neuromas go.
“If� you have an AN tumor …post back with us and we can give you more information (hopefully not bombard you …) Personally I am praying that you don’t have one … but know if you do you will be very much welcomed here on the forum… There are many supportive people here… with a wealth of experience.
Keep moving forward
4 :)
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Thanks all!
I'm not letting myself get too worried yet - doesn't make sense. Which is not to say that I haven't thought about it - a lot. Oh well.
Thank you for the advice of what I'll need to ask for and about at the appointment.
I've had the audiogram - with the pressure test. I did not get a copy of that but will ask for it at the ENT appointment. The audiologist is the one who mentioned that I would need an MRI, along with the words, benign tumor. Did some googling and found this forum. I'll see the ENT this Thursday, weather permitting.
Again - I've read many of the posts here - and the support you give to others is wonderful.
Thank you,
Colleen
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Me again...
Saw the ENT this morning - got a copy of my hearing test - scheduled the MRI for Tuesday morning. The doctor was very low key, didn't even say acoustic neuroma until I asked.
I'll keep you posted and thank you again for your help.
Colleen
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My thoughts will be with you Tuesday.
Hang in there,
4 :)
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I'll be thinking of you... keeping you in my prayers. Try not to stress...............