1. < Brain Tumor

Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

Posted by Tracy Lynne Daley @tracylynnedaley72, Jul 23, 2015

My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person's balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

lmp1 | @lmp1 | Oct 1, 2017
In reply to @saucy "Has anyone ever heard or had this type of tumor?" + (show)
@saucy

Has anyone ever heard or had this type of tumor?

Jump to this post

@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)

REPLY
1 reply
saucy | @saucy | Oct 1, 2017

Has anyone ever heard or had this type of tumor?

REPLY
13 replies
Kyzap | @kyzap | Jul 12, 2017

Yesterday was my 12 year anniversary! 10 hour surgery and I found out later I had hydrocephalus and had a LP shunt put in. I lost some movement on the right side of my face and full hearing in my right ear.

There are days that I forget that I had a tumor and I'm so grateful for everything the Mayo and the surgeons were able to do.

REPLY
acoustic neuroma brain tumor | @bfuller | Jul 7, 2017

I had surgery for a 4cm at Vanderbilt Tn in 2014 I am in charge of a walk for this rare tumor in Ga on July 22 to help bring pubic awareness to this tumor. Their is an Acoustic Neuroma Association the corp office is in ga their are support group for Acoustic Neuroma all over the USA go on the association to find one in your area

REPLY
kkkk | @kkkk | Apr 26, 2017

When I asked my ENT doctor about surgery that way, he said that I was not a candidate for that since I still had quite a bit of hearing in my ear and my acoustic neuroma is still small. He suggested wait and watch and eventually radiation, when and if necessary, which I was also told can cause cancer in 2 percent of patients. That was a year ago, and I am due for another MRI.

REPLY
lindarolin | @lindarolin | Apr 25, 2017

I have an AN that was diagnosed in 2015. I was wondering if anyone opted for surgery directly through the ear? I know that it is 100% hearing loss in that ear but the surgery is not as involved.

REPLY
tloftis | @tloftis | Apr 23, 2017

Was diagnosed with acoustic neuroma a month ago by ENT after mri. I have all the symptoms of acoustic neuroma. Neurosurgeon said it was trigeminal neuroma after looking at mri. He wrote the name of tumor down on card after I wanted to know how to spell it. Said to watch and wait, that was it. Gave me no other info! Sent me to neurologist for pain meds for the nerve pain. She knew little about my condition. Recommended watch and wait too. I will have another mri in 5 months. Left with prescription for gabapentin and no info about what I had. Pain and symptoms are getting worse. Am I crazy to want another opinion to find out what's going on in my head and what to expect? I live in NC so I want to go to Duke University Hospital for 2nd opinion. Neurologist said I had to ask neurosurgeon to refer me. Going to see how that goes this week. Thanks and praying for all.

REPLY
khegrat | @khegrat | Apr 23, 2017

Hi Katfred! I had an acoustic neuroma removed in 1999. Yes life has changed but nothing that can't be handled. I found it helpful to reach out to The Acoustic Neuroma Association. Lots of helpful information and a forum to connect with others that have this same tumor as well. I hope you feel better and this website will help you as well.

REPLY
rosesareredmylove2016 | @rosesareredmylove2016 | Apr 23, 2017
In reply to @kkkk "About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69...." + (show)
@kkkk

About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69. My doctor said the median age is 71, and they do not like to operate on older people.) My doctor suggested it best to wait and watch it since I do not notice symptoms yet, except for some gradual hearing loss in my right ear and ringing in my ears. Living one day at a time and trying to enjoy each day has been my goal. When necessary, the doctor suggested radiation therapy, which can cause it to become cancer in 2 % of cases. I am not at all enthused about any kind of surgery, especially on my head. I am really hoping for a new kind of treatment, such as immuno-type therapy where you take a pill, and it goes to the tumor and shrinks it or makes it disappear. Some doctors are now using it for cancer tumor treatment with some amazing results.

I just wanted people with acoustic neuroma to know you are not alone, and I know it is like sitting on a time bomb and is quite nerve racking. I try to keep busy and not dwell on it. We can try to find some talented doctors, pray for a cure, and hope for the best. Good luck to you all!

I also have two small thyroid nodules that the doctor is watching; the larger one checked was benign. Thank God! Last month I had an attack of acute pancreatitis and was in the hospital four days, three on an IV. They could not find out exactly what caused the problem but thought a gall stone traveled through my pancreas. Now I have tendonitis in my right foot from going up and down 14 steps too much. (My daughter recently had a breech C-Section and could not climb up and down her stairs for several weeks.) For over the past year, it seems I just get one problem paid for and get another. Hopefully, it will not get any worse this year. I am still feeling pretty good, though - even with all of my medical problems.

Jump to this post

GoodMorning KKK:
I don't know where you live, or who your Doctors are. But the U of M ,performs 300 of these brain surgeries a month.
there's No median age , when you consider 1 in 100.000 get an Acoustic Neuroma.I have GREAT Nueosurgeons there. I trust them...

REPLY
rosesareredmylove2016 | @rosesareredmylove2016 | Apr 23, 2017
In reply to @dinjian "Hi Tracey, I am 65 years old and was diagnosed with Acoustic Neuroma on my left..." + (show)
@dinjian

Hi Tracey,
I am 65 years old and was diagnosed with Acoustic Neuroma on my left side 16 years ago. The only symptom I had was severe dizziness. A CT scan diagnosed me with the Acoustic Neuroma. I elected to have surgery since my doctor told me my tumor would only get bigger. My tumor was wrapped around my hearing, facial an balance nerve. Two days after my surgery I lost the hearing in my left ear and had severe left sided facial drooping and balance problems. I could not close my left eye and had to wear a eye patch. My facial drooping has improved with reconstructive plastic surgery. I can close my left eye. I have no hearing in my left ear and have a constant ringing which I have gotten used to. I still have balance issues. My Acoustic Neuroma has given me challenges to work though, but I don't let it keep me from leading a happy and productive life.
Good Luck you...

Jump to this post

Good Morning dinjian:
I will be 61 this year. I had my brain surgery in 2014. Ive hearing loss in my left side. Balance some days is a bit funky.
But like you, Ive found ways that work for me to cope with the after effects of the surgery.
You gotta realize, there is NO brain surgeon that can predict what your life will be like after this surgery. Everyone is different.
I just refuse to let Brain surgery keep me from doing the things I love to do. So my life is a daily challenge....

REPLY
View MoreView Less
Please sign in or register to post a reply.