Author Topic: My first MRI is next week (undiagnosed)  (Read 5659 times)

robotcolony

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My first MRI is next week (undiagnosed)
« on: February 26, 2016, 09:25:15 am »
Hi all - I am not sure if it's strange at all to post here if I'm not yet diagnosed, but I'm feeling some anxiety that I didn't really expect to feel.

I've been experiencing tinnitus in my left ear for about a year now, and I finally mentioned it to my PCP on a whim while telling her about other things that seemed unrelated. She seemed a bit concerned when I told her I also occasionally get a drooping eyelid on my left side only, along with (but not necessarily at the same time) occasional tingling / pins and needles around my left temple. She suggested I go to an ENT to get a consult and get myself a hearing test, just to make sure there was no hearing loss on that side. She asked other questions about balance, but other than the very rare vertigo I've gotten waking up some mornings, I have not experienced any severe loss of balance. To my knowledge also, the hearing in my left ear has not really changed.

My ENT asked me similar questions, but scheduled an MRI very quickly to rule out AN, and also put an order in for an audiogram and a hearing test. My MRI is in a week, it will be the first one I've ever had (I'm 29/f). I have to be honest, while I did run across information about Acoustic Neuroma while researching tinnitus, I got the impression that it was such a rare occurrence that I shouldn't worry about it. My ENT stressed this as well. However, with some of the weird things going on with my face, I'm definitely becoming increasingly anxious about it.

My question is, have any of you experienced drooping facial features as symptoms with AN? Thank you so much!

PaulW

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Re: My first MRI is next week (undiagnosed)
« Reply #1 on: February 26, 2016, 11:58:52 am »
There are lots of things many of them temporary or far less bothersome than an AN that can cause AN like symptoms.. So take a deep breath and hope it's something harmless.
Not many people have eyelid problems as an early symptom.
It's normally hearing loss, followed by tinnitus and balance problems
In saying that my very first symptom was having my right eye stuck open not being able to blink for a few hours. Went to hospital had a CT scan they found nothing. 18 months later had hearing loss and the AN was discovered on MRI. it could be an AN, and the MRI is the only way to rule it out.
Fingers crossed it ends up being something boring and harmless...
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

robotcolony

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Re: My first MRI is next week (undiagnosed)
« Reply #2 on: February 26, 2016, 12:57:10 pm »
There are lots of things many of them temporary or far less bothersome than an AN that can cause AN like symptoms.. So take a deep breath and hope it's something harmless.
Not many people have eyelid problems as an early symptom.
It's normally hearing loss, followed by tinnitus and balance problems
In saying that my very first symptom was having my right eye stuck open not being able to blink for a few hours. Went to hospital had a CT scan they found nothing. 18 months later had hearing loss and the AN was discovered on MRI. it could be an AN, and the MRI is the only way to rule it out.
Fingers crossed it ends up being something boring and harmless...

Thank you for your response! Looking around, I did notice that eye problems seemed to be more of a post-op complication than pre-diagnosis symptom. My PCP also scheduled me to see an eye doctor, because I did have a span of time of about a month where I had some on and off vision problems in that left eye (it was as if I looked into a bright light and there's that residual "shadow" of the light imprinted in my vision).

It's definitely more probable that it's something else neurological in nature and not AN. Thank you again for your insight, I'm trying to remain calm about it, since I know the chances are so incredibly slim, but it worries me that these strange things are occurring on the left side of my head. While I was with the ENT I didn't think anything of it, because tinnitus, on the other hand, is incredibly common.
« Last Edit: February 26, 2016, 12:58:43 pm by robotcolony »

arizonajack

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Re: My first MRI is next week (undiagnosed)
« Reply #3 on: February 26, 2016, 01:46:46 pm »
Hi all - I am not sure if it's strange at all to post here if I'm not yet diagnosed, but I'm feeling some anxiety that I didn't really expect to feel.

You're not the first pre-diag to post here and you are certainly welcome here at any time.

Not much you can do but wait until you see the results of your MRI.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

PaulW

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Re: My first MRI is next week (undiagnosed)
« Reply #4 on: February 26, 2016, 03:04:23 pm »
Acoustic Neuromas are actually quite common and make up around 7% of primary brain tumours. Fortunately as far as brain tumours go they are the "best" one to have as the long term outcomes are generally good.
The statistics for ANs are around 1.4 per 100000 people per year are diagnosed. However from Autopsy studies the figures are estimated at 2.0 per 100000 per year. This means there are an awful lot of people wandering around with AN's that don't even know they have one.
With an 80 year life span the life time risk of AN is 160 per 100000. That's 1 person in 625.
and 1 person per 1000 that will have one diagnosed.
From the information you have posted, there appears to be at least 3 nerves involved.
Tinnitus : hearing nerve, numb face: trigeminal nerve, eye lid: facial nerve
Acoustic Neuromas can cause vision problems but not normally like you are describing.
So could it be something else neurologically? Absolutely....
If it is an AN its aggravating 3 nerves, it's more likely to be medium to large in size... Your symptoms are not "classic" AN but it certainly could be. Those MRI results definitely needed to eliminate an Acoustic Neuroma good luck with everything and please get back to us with the results.
Quite a lot of these problems, no root cause is found, however increasingly there is a link to latent viral effects, mainly from the herpes family of viruses which includes chicken pox. Sometimes happening years or decades after the initial infection
« Last Edit: February 26, 2016, 03:12:26 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

robotcolony

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Re: My first MRI is next week (undiagnosed)
« Reply #5 on: February 26, 2016, 04:55:57 pm »
Acoustic Neuromas are actually quite common and make up around 7% of primary brain tumours. Fortunately as far as brain tumours go they are the "best" one to have as the long term outcomes are generally good.
The statistics for ANs are around 1.4 per 100000 people per year are diagnosed. However from Autopsy studies the figures are estimated at 2.0 per 100000 per year. This means there are an awful lot of people wandering around with AN's that don't even know they have one.
With an 80 year life span the life time risk of AN is 160 per 100000. That's 1 person in 625.
and 1 person per 1000 that will have one diagnosed.
From the information you have posted, there appears to be at least 3 nerves involved.
Tinnitus : hearing nerve, numb face: trigeminal nerve, eye lid: facial nerve
Acoustic Neuromas can cause vision problems but not normally like you are describing.
So could it be something else neurologically? Absolutely....
If it is an AN its aggravating 3 nerves, it's more likely to be medium to large in size... Your symptoms are not "classic" AN but it certainly could be. Those MRI results definitely needed to eliminate an Acoustic Neuroma good luck with everything and please get back to us with the results.
Quite a lot of these problems, no root cause is found, however increasingly there is a link to latent viral effects, mainly from the herpes family of viruses which includes chicken pox. Sometimes happening years or decades after the initial infection

Thank you for the information, I didn't even consider that a lot of ANs don't get large enough to cause problems and that would make it much more common. I agree that if there is an Acoustic Neuroma or other type of mass in my head, it would have to be quite large to be the root cause of all of these issues. I hope that it is just something else coincidental.

When you mention latent viral effects, do you mean as a cause or partial cause for Acoustic Neuroma? I had a severe case of chicken pox when I was around 9-10 years old.

PaulW

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Re: My first MRI is next week (undiagnosed)
« Reply #6 on: February 26, 2016, 07:40:30 pm »
Chicken Pox once you have it stays dormant in your body.
Shingles is actually the chicken pox being activated again.
Bells Palsy is theorised to be caused by a latent viral effect..
Sudden hearing loss and other weird nerve problems too.
It's certainly being blamed for unexplained weird stuff
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!