Author Topic: i think i have an acoustic neuroma  (Read 13219 times)

basito

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i think i have an acoustic neuroma
« on: December 21, 2010, 07:55:13 pm »
hi everyone i am new here and pretty scared. it all started 3 weeks ago Tuesday morning when i woke up with a ringing in my right ear. its wierd bcuz i dont describe it as a ringing sound, id say its more like a high pitched sound like when a tv is on. anyway its been a non stop nightmare. when im busy i dont notice it, but when its qiuet i do. went to urgent care two weeks ago and had earwax removed from the right ear and was given some anti inflammatory pills and a nasal spray. used all the pills and ears still ringing. about a week ago the scary stuff started happening. my cheeks went numb twice in one day, i started getting dizzy, urge to vomit, and imbalance. last night i went to the e.r. bcuz my face started twitching along with other parts of my body. told the doc all my symptoms so he tested my reflexes and said i seemed fine. i asked if i could get a scan on my head bcuz i think i have an acoustic neuroma. he kinda chuckled and said he'd be okay with that. he sent me in for a ct scan :-\ i wanted an m.r.i. but since hes the dr. i made no arguement. the ct scan came out clear is what he said. so i was sent home when i got home at 3am i laid in bed and had a roaring sound in my head for the first time, dont know if it was bcuz of the ct scan. anyway i woke up this morning with a rapid heart beat like a panic attack, and i know panic attacks quite well , but this felt different. ive gotten really depressed today and i feel helpless. i have an appointment on dec. 29th with an audiologist and a head and neck specialist in the same day. today my face has been twitching a bit nothing major but it worries me. the twitching of my face and body happens most right when im about to fall asleep. i woke up from a little nap earlier and had a wierd taste in my mouth. ive been reading up on AN so much its probably not a good thing. im so frustrated bcuz it doesnt seem like a big deal or an emergrncy to the dr.'s or my family. everyone keeps telling me im fine >:( im just scared bcuz im a single father i have a ten yr old dughter. oh and i use to use my cell phone like crazy and my right ear was the dominant phone ear. i dont even want a cell phone near me anymore!

opp2

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Re: i think i have an acoustic neuroma
« Reply #1 on: December 21, 2010, 08:18:29 pm »
Hi There Basito....ok step back a bit and take a big deep breath. I sincerely hope you don't have an AN, but if you do, let's remember they are rarely fatal. You are just now experiencing symptoms and the internet is a wonderful horrible place all at the same time. It's very hard to wait for a definitive answer I know especially when you are suffering from symptoms that you can't explain. I have the tinnitus as well, white noise consistently in my ear. My hearing was really good before my tumour was removed but I'm since deaf in that ear and still suffer tinnitus on that side. Tinnitus can happen for many reasons outside AN. The facial twitching is something I suffered before my diagnosis, then tingling and growing numbness over the year leading up to surgery. This can also be attributed to other issues.

We are here to help and support you as you make your way along. CT scans are able to produce images of AN but I believe most surgeons prefer an MRI but there are other tests. Hopefully your other specialist appts will help you feel better. Try to focus on the holiday season and know that even if you do have AN you have time to make a choice on treatment and follow up care.

All the best.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

TJ

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Re: i think i have an acoustic neuroma
« Reply #2 on: December 21, 2010, 08:43:41 pm »
Initial fear is common, as previous writer said take a deep breath.  Hopefully you do not have an AN but if you due they are very treatable.  There are many different things that can cause tinnitus such as fluid in the inner ear or Menieres disease.  When you get the answers from your doctor you have time to make the correct decison for you.  We are here to help you get though the process.

Take care

Tj

basito

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Re: i think i have an acoustic neuroma
« Reply #3 on: December 21, 2010, 09:24:02 pm »
thank you guys, its a blessing to find people who can relate

PaulW

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Re: i think i have an acoustic neuroma
« Reply #4 on: December 22, 2010, 03:55:12 am »
Hi Besito,
Until an MRI with contrast is done you really cannot rule out an Acoustic Neuroma.
But hey be positive. Your problem could be as simple as a virus.
About 90% of people have hearing loss in one ear as a presenting system too, you haven't mentioned hearing loss.

The CT scan would show a large AN so you probably dont have a big one, if you have one at all.
My AN was only 10mm x 5mm x 5mm and my CT scan came up as a suspected AN.
The odds are with you that you do not have an AN.
Keep looking for an answer.
Good luck.

I am not a doctor, so please consult your doctors.

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!

suboo73

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Re: i think i have an acoustic neuroma
« Reply #5 on: December 22, 2010, 05:56:51 am »
Hi Basito,

I am sorry to hear you are having difficulties with tinnitus, vertigo, etc.
As PaulW said, the MRI with contrast is the best test to have to rule out an AN.

I have been dealing with this for 14+ years now, because prior to my MRI in Oct. 2008, all other tests were inconclusive, so no docs ordered an MRI.
As a matter of fact, after my older sister was diagnosed within 6 months of symptom onset, I went to major medical center, had an hearing test and it was still inconclusive.
So I asked for the MRI, and the rest is history.

We are here for you and we understand your concerns.
Please send updates after your doctor visit.

My thoughts and prayers are with you during this time.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

basito

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Re: i think i have an acoustic neuroma
« Reply #6 on: December 22, 2010, 11:04:50 am »
thanks all for the replies. i dont think i have any hearing loss. i have been getting strange headaches though. is there any link between AN and heart palpitations? i've been waking up with major palpitations the past two days.

kareno

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Re: i think i have an acoustic neuroma
« Reply #7 on: December 22, 2010, 11:36:27 am »
Hi Basito:

I just wanted to let you know that you will be in my thoughts and prayers and I wish you all the best with your future doctors appointments so they can give you the proper diagnosis and treatment.  All the anxiety you are feeling can cause some unpleasant symptoms as well.

Take care,

Karen
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

DR

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Re: i think i have an acoustic neuroma
« Reply #8 on: December 22, 2010, 04:40:38 pm »
is there any link between AN and heart palpitations? i've been waking up with major palpitations the past two days.
I'm not a Doctor, nor do I play one on TV, but I have read that heart palpitations can be caused by stress.  You might want to contact a general physician if this situation continues or gets worse.

Hopefully you will get the "all clear" on the 29th, but even if the news is not good, it is not the end of the world.  Let us know what you find out from your appointments.

- Dennis
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

jaylogs

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Re: i think i have an acoustic neuroma
« Reply #9 on: December 23, 2010, 05:03:01 am »
Yes, as Dennis said, it's not the end of the world if you do have one.  For one thing, these AN's are very rarely cancerous, it's not even a thought for most people. The danger is as it gets bigger it starts pressing into the brain, which can cause all sorts of problems.  But, fear not...it's very ok to feel scared. But try get answers before assuming too much.  Let us know how it goes, good luck and take it easy!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Jim Scott

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Re: i think i have an acoustic neuroma
« Reply #10 on: December 23, 2010, 04:19:08 pm »
Basito ~

Hi - and welcome to the ANA discussion forums. 

No one here can diagnose the cause of your symptoms but we can certainly empathize with your concerns and frustrations.  Of course no one wants to see another person being diagnosed with an acoustic neuroma but if that turns out to be the case, you'll have an instant 'family' of supportive folks here. Your depressed state is all-too familiar to many of us.  It's maddening to suffer with these disturbing symptoms and not know the cause while, because your symptoms are 'invisible' to the people around you even doctors seem caviler about what concerns you, which is frustrating, we know.  Frankly, only an MRI scan (with gadolinium dye for contrast) can verify or eliminate the presence of an acoustic neuroma. CT scans are usually fine but can 'miss' a small acoustic neuroma.

As for your cell phone, there is no scientific/medical proof that using a cell phone induces the development of an acoustic neuroma.  ANs were first identified over 100 years ago, which should give you some perspective on the issue.  However, if you feel better not using a cell phone, by all means do what is best for you.  We're here to support AN patients (and possible future AN patients) and we accept your choices without argument because those decisions are yours to make and we respect that reality.  I wish you good luck on your doctor appointment next week.  Meanwhile, try to take a breath, step back a bit and enjoy Christmas.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

basito

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Re: i think i have an acoustic neuroma
« Reply #11 on: December 24, 2010, 12:28:36 am »
thanx for all the suporrt, you are all very kind. i will take your advice and enjoy my christmas! lol, its like we cant say christmas anymore ::) sheesh.

cherrypiper

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Re: i think i have an acoustic neuroma
« Reply #12 on: January 05, 2011, 09:21:46 pm »
well i found my AN due to the tinnitus on my rt ear. turns out AN had completely silenced my rt side hearing.

these are fairly slowly growing tumors, kinda like a wart on the inside. and 95 % to 99.5% are said to be non cancerous.

so you got plenty of time . relax, try and ask your Dr. to send you to at least 5 other folks he has done. to see what ?'s and how could his work is.

hold back and let him tell you all the details. when he asks you for concerns ask him

" i have heard 20 to 40 % of folks have some facial paralysis" what are the percentages of your patients and i want to meet them.
10 mm x 2.4mm surgery date 12/03/07

glad to be here

leapyrtwins

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Re: i think i have an acoustic neuroma
« Reply #13 on: January 07, 2011, 01:04:26 am »
basito -

any news yet?  Have you found out whether or not you have an AN?

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Crazycat

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Re: i think i have an acoustic neuroma
« Reply #14 on: January 10, 2011, 07:40:22 pm »
Basito,

 I was in a similar predicament in that I pretty much diagnosed myself. The chief differences between us being the first signs for me was hearing loss. The other syptms developed over a period of 5 years or so before I crawled into a hospital for treatment.

Then again, we're all put together differently and experience a wide variety of symptoms at different times and in different order.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.