Author Topic: Classic symptoms and no AN  (Read 3707 times)

LizzieLu

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Classic symptoms and no AN
« on: July 12, 2016, 03:48:15 pm »
I hope that this will be my first AND LAST post to this board. If you are coming here with similar symptoms, please get them checked out, but also please know that the odds are in your favor!

My story (sorry for the length!): About 20 years ago while camping, I lay in my sleeping bag marveling at the total silence of the wilderness. Then I rolled over... Suddenly there was a cacophony of crickets! I quickly realized that I could not hear high frequencies out of my left ear. I could still hear lower frequencies, so I didn't worry about it. As a college student, I didn't realize that this was something I should have had checked out right away. Years later I did mention this to my GP at the time, and she said it was nothing to worry about.

The hearing in my left ear very gradually got worse over the years. I have no problem with phone conversations, but sometimes I have to turn my head when people are whispering or speaking very softly. Then about two months ago, at age 41, the tinnitus in my left ear started very suddenly and has not stopped. Sometimes it sounds high-voltage electricity, sometimes it's a pure high-frequency tone, and sometimes it sounds like someone is letting the air out of my brain. But it just doesn't let up! It was at this point that I hit the internet and got very scared. It seems that every medical site is telling us that unilateral tinnitus is a red flag symptom. Yikes!

I went to my current GP who said my ears looked clear and referred me to an audiologist and an ENT. I had to wait a month and drive 90 miles for the ENT. (It would have been a minimum 4 month wait to see anyone closer.) My audiogram looked exactly like the typical AN audiogram: the left ear was consistently about 20 dB worse than the right until the high frequencies where the left ear graph plummets, and this hearing loss was at the nerve level.

As you all know, the next step is an MRI. They did it without contrast but assured me that the machine they have would pick up even tiny acoustics. Two days after the MRI, the left side of my upper lip started feeling numb like I'd just had dental work done. Oh no, another AN symptom! Well, the numbness went away to be replaced by a cold sore, likely stress-induced. It's the only time in my life I've been happy to have a cold sore!

At any rate, the MRI came back completely normal. The ENT said that the tinnitus is due to the hearing loss, and that could could be due to any number of things. I'll go back to the audiologist in 6 months, but right now it's not bad enough for a hearing aid.

If you've read this far, thanks for reading, and I hope your MRIs look good, too!
 
Many, many thanks to all of you who have shared your stories. They made my long wait (2 months between onset of tinnitus and receiving mri results) much more bearable knowing that even if they had found something, it wouldn't be the end of the world.

LizzieLu

michellef08

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Re: Classic symptoms and no AN
« Reply #1 on: July 13, 2016, 07:25:03 am »
Hi LizzieLu,
I'm pretty certain I have read personal stories on this forum of people having an MRI done without contrast, and nothing shows up. However, when they get an MRI with contrast, their AN is seen clearly. It's been on a few discussion topics recently. I would recommend getting one with contrast since your symptoms could be indicative of an AN. That way you can truly rule it out as a cause. So many people don't have their AN's diagnosed for years and their symptoms just get worse and the tumor might be growing. Good luck!
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

rodneyd

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Re: Classic symptoms and no AN
« Reply #2 on: July 13, 2016, 11:34:39 am »
Hi ladies,

It was interesting reading about the use of contrast or no contrast.  The contrast medium is typically Gadolinium, a heavy metal, which is coated (or chellated) to minimize any harmful side effects.

I am a W & W patient, and have had several MRI's, all but one with the contrast agent.  When I viewed the non-contrast MRI along with the radiologist (not correct name, but you get the picture), using the Fiesta Image, my AN is very clearly delineated.  It doesn't look any different than the MRI with the contrast agent.

There has been a recent study that shows that some of the Gadolinium stays within brain tissue for an extended period of time.  However, there has been no study showing the effects of the Gadolinium because it has stayed in the brain, so more research work is needed in this area.

Most of the Gadolinium is excreted following the testing, but it had been thought that all of it would be excreted, and the new study shows that this is not the case.

In my case, I have made the decision to not have the contrast agent unless I am very serious about having radiosurgery, when having the most accurate information is critical.  Of course, this decision is a distinctly individual one so I am not trying to suggest that everyone should follow my decision and not use the contrast agent.  My thought was that it is a good topic for discussion with your physicians/radiologist to see what they recommend.   

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

Tina1980

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Re: Classic symptoms and no AN
« Reply #3 on: July 29, 2016, 05:08:22 am »
NEWBIE HERE! I just had an MRI without contrast.. Should i get one with contrast if it comes back negative?
Symptoms:
numbness and tingly right side of face and right side of tongue for over a month now
pressure in right side of ear the feeling of ear fullness and ringing. slight pain.
NO hearing loss tho at least i don't think so because i haven't been to an ENT.

Neurologist sent me for an MRI and said it could be a pinched nerve but i don't know why would my ear be ringing and it's only the right side one where all my symptoms are happening?

Should i demand an MRI with contrast? Should i see an ENT, can only an ENT diagnose me with AN?

Thank you everyone sorry i have so many questions! Please help!
« Last Edit: July 29, 2016, 05:11:04 am by Tina1980 »