Author Topic: Curious about other people's symptoms  (Read 5080 times)

chelsea

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Curious about other people's symptoms
« on: January 18, 2018, 06:07:57 pm »
hi,

newbie here... 2.5 cm left side, 30y.o. female

Curious if other people have a feeling of sinus pressure or anything like that in relation to the AN, or is it something completely different?
What about a very mild feeling of flu-like symptoms?

I have some standard ones like facial tingling, ear stuff and sometimes dizzyness, but I am curious about these other more vague symptoms and if anyone else experiences them in relation?

Also I often have the sort of weird funny feeling in my head, which I think other people have discussed on this forum... but i'm not entirely sure how to describe it? Just like a subtle odd feeling in my head?


chelsea

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Re: Curious about other people's symptoms
« Reply #1 on: January 19, 2018, 02:26:03 pm »
Anyone?
And what about jaw pain and neck pain?

AL-Tcw

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Re: Curious about other people's symptoms
« Reply #2 on: February 05, 2018, 01:22:09 pm »
I feel like I have pressure sometimes on the top of my head but mostly my forehead & nose. I first thought I was having sinus headaches so did the first ENT I saw. When I'm having the headaches yes my head feels weird. I'm not having the facial issues other than eye lid jumping sometimes. I wish you well
Diagnosed 1/10/18 AN 3.2cm x 2.2cm
Translab 8/30/18 (Facial Paralysis) Cyberknife 12/18-20/18, BAHA abutment 12/28/18

Flo2009

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Re: Curious about other people's symptoms
« Reply #3 on: February 09, 2018, 09:25:14 pm »
I have daily headaches that vary in intensity throughout the day. They range from just annoying to migraine level and back to just annoying.  Some days, the pain stays at migraine level most of the day. (This is becoming a more frequent occurrence). I also get a frequent stabbing pain right in front of or directly below, the ear on the side of the tumor. It only lasts for about a minute or two but stops me in my tracks! The neurosurgeon explained that the stabbing pain was due to intermittent pressure on a nerve (not TMJ related) yet the patient coordinator at Mayo told me that this tumor shouldn’t cause headaches! Is anyone else experiencing headaches from their tumor?

Patti

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Re: Curious about other people's symptoms
« Reply #4 on: February 10, 2018, 01:50:24 pm »
I had frequent, bad headaches and occasional stabbing headaches.  After surgery they were gone.  Mostly. 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Gtmochi

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Re: Curious about other people's symptoms
« Reply #5 on: March 01, 2018, 08:11:03 pm »
Hi!

My very first post here - I've been lurking for ages, though  ;).

I have slight tinnitus, full ear, varying degrees of tingling on my right cheek, jaw and tongue.  That last bit comes and goes, as well as is sometimes just one spot.

My right side AN was recently diagnosed (as in 2 weeks ago) and measures 1.8cm x 2.2cm x 2.5cm (so 2.5, I guess?) and am generally freaking out and trying to figure out what path to take. I live in Los Angeles, and am a 42 y.o. female.


Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Kjayhill

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Re: Curious about other people's symptoms
« Reply #6 on: March 31, 2018, 07:16:51 am »
Hi,
I had symptoms with the "wonky" head and vertigo pre surgery.  Also, I felt pressure and almost flu like with fatigue.   The head feeling you describe is sort of like a floating feeling like you are on a ship and things are fuzzy.    I also had balance issues and sudden loss of hearing a few times.  Each time my hearing would come back to 100% with steroids.  After the vertigo started is when they diagnosed the AN.
My head feeling and some balance issues still linger after the surgery.   Sometimes I feel like my brain is jiggling in my head!
 I did become SSD, even though I had Middle Fossa with the high chance of saving 100% hearing.  It was a fluke at the 8th hour of surgery the hearing just dropped out.  I had so much fluid they thought that it would come back.   
Kind Regards,
Kathy

AN Warrior since March 28, 2017
(Middle Fossa)
PONTO BAHA since November, 2017

Greece Lover

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Re: Curious about other people's symptoms
« Reply #7 on: March 31, 2018, 12:21:01 pm »
it always seems that there are a lot of varying symptoms for people.  Nerves can manifest symptoms in various ways, I think.  I also think that I have "ghost" symptoms sometimes, which come from just being so intensely aware knowing that there's a tumor in your head (or, in my case, I can hopefully use the past tense).  As Clark Griswold says in Christmas Vacation, "It's all part of the experience."

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.