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.

breich0226 | @breich0226 | Jan 14, 2018

In reply to @breich0226 "Does anyone else have this so we can see if we can help each other with..." + (show)

Thanks Colleenyoung

Teresa, Volunteer Mentor | @hopeful33250 | Jan 14, 2018

@bfuller We appreciate your sharing your experience with us at Mayo Connect. I see that you just joined Connect and I'd like to welcome you.

At Connect we seek to encourage and support each other as we deal with difficult medical problems. The sharing of your plan of action was a good one and you were right to find a doctor well versed in this type of surgery.

If you care to share any details of your surgical experience, we would like to hear about it. Did you notice a relief of symptoms right after surgery? How are you feeling now?

Teresa

acoustic neuroma brain tumor | @bfuller | Jan 14, 2018

In 2012 I had almost a 4cm Acoustic Neuroma Brain Tumor. It will depend on the size of the Acoustic Neuroma Brain Tumor what plan of Action to take. I will tell you, you want a doctor that is well versed in doing this type of surgery I live in GA and I went to Vanderbilt in Nashville Tn for my surgery. There is an Acoustic Neuroma Association and on the web site it will show where there is doctors that are known for doing these types of tumors.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 14, 2018

In reply to @hoosier2 "In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo..." + (show)

Hello @lynda1992

Thank you for sharing your great experience. I'm sure that it will encourage others who are facing something similar.

Teresa

lynda1992 | @lynda1992 | Jan 14, 2018

In reply to @hoosier2 "In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo..." + (show)

I was referred to Dr. Patrick J. Kelly at Mayo Clinic in November 1992. I had emergency stereotactic craniotomy to remove a tumor that was located in my left ventricle. The pathology results came back that is was an intraventricular pilocytic astrocytoma. A rare benign tumor. I, too, was very fortunate to be at Mayo Clinic. That was 25 years ago and I'm still going strong. I wish you the best of luck!

Teresa, Volunteer Mentor | @hopeful33250 | Jan 13, 2018

In reply to @breich0226 "Does anyone else have this so we can see if we can help each other with..." + (show)

@pedie

I am glad to hear that your current treatment (the shunt) is working well for you. That is wonderful that you are able to drive and enjoy other activities. However, if you are experiencing more dizziness, I can understand your concern.

Have you mentioned this to your doctor? Did your doctor say why he does not recommend surgery? When there is uncertainty about a course of action, a second opinion is always wise. Have you sought a second opinion yet?

Teresa

hoosier2 | @hoosier2 | Jan 13, 2018

In reply to @hoosier2 "In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo..." + (show)

Me too! He saved my life! He was ahead of his time!

Jamie Olson | @jamienolson | Jan 12, 2018

In reply to @hoosier2 "In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo..." + (show)

Hi @hoosier2! When I first started at Mayo I worked with Dr. Harner- when I picture him I just remember how he would always look over the top of his glasses. 🙂 What a wonderful physician.

Colleen Young, Connect Director | @colleenyoung | Jan 12, 2018

In reply to @breich0226 "Does anyone else have this so we can see if we can help each other with..." + (show)

Good question, Pedie. @mrser52 talks about the stereotactic radiosurgery (SRS) experience here. https://connect.mayoclinic.org/discussion/meningioma-brain-tumor-on-right-trigeminal-nerve/

You might also be interested in this discussion:
- Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/

hoosier2 | @hoosier2 | Jan 12, 2018

In the fall of 1992 I was diagnosed with an acoustic neuroma. I was at Mayo in Rochester for my yearly physical. I mentioned to my Dr. that I thought I had lost a bit of my hearing. After a hearing check, he ordered an mri with contrast which confirmed the neuroma. I was introduced to Dr Harner a specialist on acoustic neuroma's and their treatment. As I remember, at that time, there were not a lot of options. After much discussion we decided on surgery to remove
the neuroma. I had the surgery about a month later at Mayo and all went well! A couple of days later they discovered I was a "leaker" which meant I was loosing fluid from the brain cavity through my nose. Answer, another surgery to repair the leak. All went well and a month later I returned to teaching and my consulting business. My balance was suspect, but something I could live with. When I eat my nose runs, again,something I can live with! I was very fortunate to be at Mayo and have the surgery when I did! I'm 82 now and still teaching and doing consulting! Good luck with your decision and wish you a good outcome! Please contact me if I can answer any questions or help in any way!