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.

@rose4622

Doing better Teresa. Went to see my acupuncture Dr. and it has made a big difference.

Jump to this post

Wonderful, @rose4622. I'm glad to hear you are feeling better!

REPLY

My husband had surgery for an acoustic neuroma 8 years ago this May. He had a reoccurrence last Feb. 2018 in the same area. The tumors did affect his balance, and this time his right eyelid. His tumors have been on the right side and affect the seventh nerve. In September 2018 he had a platinum implant inserted in his eyelid to allow his eyelid to close. From February to September he needed to use an eye patch and several types of drops and gel drops to lubricate his eye to block out light, sediment in the air.

REPLY

Hello @dtc629,

I appreciate your sharing your husband's story about his treatments. It sounds like he has been approaching the problem in a very systematic way. Good for him and you!

How is he feeling now? Are his symptoms of balance better now and what about his vision?

REPLY

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

REPLY
@vickid117

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

Jump to this post

Good to hear from you, @vickid117. I'm glad that you are doing reasonably well since your surgery last year. It sounds as if your attitude has taken you through some difficult times and that you can be grateful for what you have.

Since your surgery, do you now hear from your right ear?

REPLY
@vickid117

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

Jump to this post

@hey vickied117. Hello I had brain surgery March 10, 2014. My balance when the barometer changes can be devistating to my balance. I can’t tell
Where noise is coming from because I lost my hearing in my left ear due to brain tumor. It was a schwanoma. Every day is challenging. I am alive , staying positive. And thankful💕

REPLY
@hopeful33250

Good to hear from you, @vickid117. I'm glad that you are doing reasonably well since your surgery last year. It sounds as if your attitude has taken you through some difficult times and that you can be grateful for what you have.

Since your surgery, do you now hear from your right ear?

Jump to this post

I have Phonak hearing aides. The right hearing aide tells the left one what it hears. It's confusing to know where the sound is coming from. Total hearing loss in right ear after surgery. It could be a lot worse. Keep positive all who are going through this.

REPLY
@rosesareredmylove2016

@hey vickied117. Hello I had brain surgery March 10, 2014. My balance when the barometer changes can be devistating to my balance. I can’t tell
Where noise is coming from because I lost my hearing in my left ear due to brain tumor. It was a schwanoma. Every day is challenging. I am alive , staying positive. And thankful💕

Jump to this post

At least we can be thankful it was non cancerous. The balance problem is ongoing. It's better than what it was in rehab. The ringing in my left ear is a daily thing. Life is definitely different since the tumor removal. Best Wishes for continued healing.

REPLY

Hey - Jennifer here. I was diagnosed last week with a 2mm (very small) AN. I happen to work at Cedars-Sinai in Los Angeles so I was able to meet with the Chair of Neurosurgery here yesterday (Keith Black). He highly recommended that we monitor it for the next 6-9 months so I will be getting a baseline hearing test soon and then another in 6 months (my call on not waiting 9) as well as a 2nd MRI at that time. He said the risks of surgery at this point outweigh the benefits. I haven't noticed any hearing loss and only got the MRI because I noticed that I was getting vertigo in specific positions and my husband refused to go to Palm Springs with me unless I found out why (he's kind of a hypochondriac which usually annoys me but paid off for me this time!). Anyway, I'm just not one to worry about things so that's where I am now. I'm just not worried. Should I be? it sounds like hearing loss is almost a definite thing whether I get surgery, radiation, or do nothing (pardon the pun!). Has anyone every had an AN without losing their hearing? Or without experiencing tinnitus or extreme vertigo? It looks like Steve (@sprucey1) is about the only person around here who has come out of this thing just fine. I have found ways to work around the moderate vertigo I have been experiencing by just not putting myself in those specific positions. I am 48, very active, and am otherwise healthy (though I've ALWAYS been super clumsy). I just want to make sure I'm being proactive enough. I would really hate to risk having my active lifestyle altered in any way at all. Any feedback is greatly appreciated!

REPLY

I have been losing hearing in my right ear very gradually over many years. When I mentioned it to my ENT doctor as I was getting two thyroid nodules examined and needle biopsied (which were small and benign), he had me take a hearing test, then sent me for my first MRI because of the auditory test result pattern. I have a small acoustic neuroma 5 x 11 mm. That was about 3 or 4 years ago. Almost a year later, I had another brain MRI, again without and with shot and was told it had not grown and I could wait 2 years before getting a 3rd MRI and thyroid sonogram, which are due this spring. I do not, so far, have other really noticeable problems, except ringing and clicking in my ear and, maybe, sometimes a few balance problems when turning or bending fast or walking in the dark. If the acoustic neuroma causes worse problems and grows too large, I will have to have radiation. These days, the choices are observation, surgery, or radiation. Since I am now 71, the ENT thinks observation of the small tumor is best, and then radiation, if needed. Also, I have been dealing with annoying irritable bowel and refux for several years, too. Hopefully, by the the time I need the AN treated, better treatments will become available. Right now, I am hoping it does not grow. Good luck with your AN journey! Everyone has different circumstances. Hope my story helps you decide what to do and helps ease your mind somewhat. .

REPLY
Please sign in or register to post a reply.