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saucy
@saucy

Posts: 60
Joined: Jul 05, 2016

acoustic neuroma

Posted by @saucy, Oct 1, 2017

Has anyone ever heard or had this type of tumor?

REPLY

@saucy yes my daughter has one. They are just watching it right now and aren’t worried so much about it because she does have a different tumor that is cancer. She lost her hearing in her right ear about 5 years ago and just recently learned that may be the cause of her hearing loss. My understanding is acoustic neuroma tumors are not cancer. (Benign)

Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!

@user_chea8a92a

Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!

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Hello @user_chea8a92a I’m Scott. My wife had an ogliodendroglioma. I’d be willing to share what I learned from being her caregiver if that would help or be of interest.

@lmp1

@saucy yes my daughter has one. They are just watching it right now and aren’t worried so much about it because she does have a different tumor that is cancer. She lost her hearing in her right ear about 5 years ago and just recently learned that may be the cause of her hearing loss. My understanding is acoustic neuroma tumors are not cancer. (Benign)

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Thank you, I read they are relatively rare. I am having hearing loss but have the CT scan at Mayo thurs.

Hi @saucy
I encourage you to join this discussion about acoustic neuromas https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/ where other Connect members are talking about their experiences.

You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/

What questions might you have as you prepare for your appointment on Thursday?

@user_chea8a92a

Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!

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Hi @user_chea8a92a
You might consider starting a new discussion in the Brain Tumor group with the title Ogliodendroglioma. It will help to bring everyone who has experience with this type of tumor to one place. Here’s how to start a new discussion.

1. Go to the Brain Tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/
2. Click START A DISCUSSION.
3. Enter a title on the topic you want to discuss. For example “Ogliodendroglioma – Anyone else?”
4. Write your message.
5. Click CREATE DISCUSSION.

@user_chea8a92a

Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!

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I don’t know what that is

After gradual hearing loss in my right ear over many years, after an MRI, I was diagnosed over a year ago with an acoustic neuroma in my right ear. Since the tumor is small, my ENT doctor suggested waiting and watching. I had another MRI in July of this year, and my doctor said that it was “very stable” and I would not have to have another MRI for two years. If it grows too large, I will have to have radiation before it causes more trouble, which has a 2% chance of causing cancer. The other choice is surgery (which they do not want to operate on older people like me – 60+), but deafness in the affected ear is expected – whatever is done. Acoustic neuromas are benign they say. I also have two small thyroid nodules that he is also watching and have to have another ultrasound in two years also. The larger nodule is benign. Good luck with your AN case. They do not know what causes them, and they are rare – just not rare enough since too many people have them.

Thanks! An lot of the stories were scary! I am 65 and a flight attendant, thought I was having veritgo and hearing loss from flying but tests show possibility of tumor. Still want to work for several more years before retiring, also I’m very active so hopefully all will be ok!

@colleenyoung

Hi @saucy
I encourage you to join this discussion about acoustic neuromas https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/ where other Connect members are talking about their experiences.

You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/

What questions might you have as you prepare for your appointment on Thursday?

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Thanks! That’s my doctor!

Hey Saucy> Yes I had a 3.5 tumor (acustic Nuroma) removed from my brain stem in 2014.They are VERY rare.1 in 100,000 people get them, go figure I did. Yea I can’t fly any more after my surgery, Air pressure messes with my head. Whatever you do. Listen to your doctors, surgeons, and PLEASE ASK Questions…Thank God my daughter is a RN nurse. I’m 61 years old, I was 59 when they found this tumor, because I had suffered from earaches for many years. Routine vist to my doctor, Bammm. Acoustic Nueroma after MRI was taken. I still have 2 percent on my brain stem nerves that go to my face, I have to get MRI eery year to make sure its not growing.
I have eye issues often, because the remains is still resting on my eye nerve…Not fun. But it could have been a lot worse

Hearing test showed asymmetrical hearing loss prompting audiologist to suggest I had MRI to check for acoustic neuroma. Wasn’t a trace of one to my great relief

I’ve had 2 acoustic neurons surgeries and gamma knife. First surgery was partial removal, was 33 mm and left 5 mm because of brain stem involvement. Gamma knife 1 1/5 yrs later and had atypical response and tumor grew back to 25 mm which wrapped around brainstem. Had all this in Wisconsin. Then went to Mayo in Rochester where they removed it all I have facial nerve damage and left sided weakness (Like having a stroke) and eye issues which is fine because I’m alive today because of Mayo Clinic in Rochester. Best Physicians Ever. I thank God everyday for them.

I had one removed in September. Last summer I started having a lot of buzzing in my right ear and dizziness. I went to the Dr and he put me on some medicine which helped but I couldn't hear out of it. I went through several rounds of this and so he sent me to an ENT who found I lost over 80% of the hearing in that ear. He did an MRI and found the AN. I have been under the care of Dr. Babu at the MI Ear Institute who is the BEST for these. I had the surgery and am doing very good. I had a few problems following surgery relating to my baha hearing implant but otherwise good. 8 months out and I have traveled across the country multiple times, have been working and even wearing heels again. I still have some issues with the taste in my mouth. Just an fyi, I was not in great shape when I had the surgery having had 2 major back surgeries in the year and a half before. I am 48.

Welcome to Mayo Clinic Connect @davgins45 @sarahsurvivor and @debrubin. You may also be interested in this discussion about AN.
– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://mayocl.in/2iVdye1

Davgins, I'm glad that your brush with acoustic neuroma was a false alarm. What was the cause of the asymmetrical hearing loss?

Sarah, Having a tumor wrapped around the brain stem does make surgery more complicated. Do you struggle with balance issues?

Deb, interesting about the taste issues. Do you mean that things taste odd or that you've lost your sense of taste?

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