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.

Not yet. I have an appointment with my primary the 30th.

REPLY
@rose4622

Not yet. I have an appointment with my primary the 30th.

Jump to this post

My neurologist the 27th.

REPLY

I was diagnosed with an Acoustic Neuroma on my left side in February 2006. It's size was 8 x 14.5 x 8.5 mm. I had hearing loss, ear ringing, and balance issues. I received Gamma Knife treatment at the University of Minnesota Fairview hospital in Minneapolis later that same year. After 10 years of monitoring the tumor with MRI's there has been no additional growth and my neurologist said that future MRI monitoring is not needed unless the symptoms change. So far so good (2018) !. My primary care physician suggested I try treatment at the National Balance and Dizzy center in St. Paul for my balance issues. They give you exercises to improve you balance. This really improved my balance and eliminated the severe dizziness. I still do the exercises from time to time if I my balance feels a little off. It usually helps. I also got a hearing aid to help with the hearing loss and I also think it helps a little with the ringing in my left ear. Nothing eliminates it and that is probably the worst symptom to me. It is also a constant reminder that the tumor is still there ! I get a hearing test every year just to keep track and my hearing loss has remained about the same after the initial loss. I am posting here because I wanted to share my story and that the balance exercises have really improved the dizziness, balance issues and just that crappy feeling you get in your head! It sounds like other people are also doing various exercises to improve their balance. The Gamma Knife treatment was a 1 day outpatient treatment with no side effects and a little bit of pain from screwing the halo into your head. I'm 60 years old and retired and do not think much about the acoustic neuroma anymore but have other aches and pains and medical issues to worry about as I get older !

REPLY

I am so pleased to hear that you have done so well since your Gamma Knife treatment, @jmlane, of 10 years ago.

Just wondering, you mention balance exercises, does that include vestibular therapy or other types of physical therapy?

REPLY
@rose4622

My neurologist the 27th.

Jump to this post

You know, @rose4622, if the insomnia continues on a regular basis a call to the neurologist might be helpful. If this is a usual symptom following surgery, the doctor's office might be able to offer suggestions to help. Post-surgery, we all need rest to recover and get back to normal.
How many hours are you sleeping at night, and how many days have you been experiencing the insomnia, now?

REPLY
@hopeful33250

You know, @rose4622, if the insomnia continues on a regular basis a call to the neurologist might be helpful. If this is a usual symptom following surgery, the doctor's office might be able to offer suggestions to help. Post-surgery, we all need rest to recover and get back to normal.
How many hours are you sleeping at night, and how many days have you been experiencing the insomnia, now?

Jump to this post

Over a week. 4-5 hours a night. I have an appt with endocrinologist Friday. May be changes to tsh. Could also be depression. I get it every year at this time. Going back on depression meds.

REPLY
@hopeful33250

I am so pleased to hear that you have done so well since your Gamma Knife treatment, @jmlane, of 10 years ago.

Just wondering, you mention balance exercises, does that include vestibular therapy or other types of physical therapy?

Jump to this post

yes I think so. It involves few different exercises. Following a pen with your just your eyes then with your head, side to side, up and down diagonal etc. First slow then fast. Turning your head from side to side as you walk. Stand on a pillow looking at a fixed object. Roll from side to side when you are laying down in bed. etc.

REPLY
@jmlane

yes I think so. It involves few different exercises. Following a pen with your just your eyes then with your head, side to side, up and down diagonal etc. First slow then fast. Turning your head from side to side as you walk. Stand on a pillow looking at a fixed object. Roll from side to side when you are laying down in bed. etc.

Jump to this post

Yes, @jmlane, some of that does sound like vestibular therapy.

REPLY
@rose4622

Over a week. 4-5 hours a night. I have an appt with endocrinologist Friday. May be changes to tsh. Could also be depression. I get it every year at this time. Going back on depression meds.

Jump to this post

I am glad to hear that you will be seeing a doctor soon, @rose4622.

Is insomnia part of the symptoms of depression for you at this time of the year? Do you still have care at home to help you get to appointments, etc.?

REPLY
@hopeful33250

I am glad to hear that you will be seeing a doctor soon, @rose4622.

Is insomnia part of the symptoms of depression for you at this time of the year? Do you still have care at home to help you get to appointments, etc.?

Jump to this post

Yes. I have a adult daughter and a son here. My hubby works days.

REPLY
Please sign in or register to post a reply.