Connect
Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain Tumor Support Group.
Connect
Hello: I had brain surgery in 2014 for a begine brain tumor . It was huge, 12 hour surgery and I still have 2 percent on my brain stem that causes me issues, but it’s better than the alternative. Now I have an mri once a year to make sure it’s Not growing. If it does grow and cause me issues , I will need spot radiation I’m told. Not looking forward to that . I pray each and every day it doesn’t grow. My life now after Brain surgery is difficult enough.
-
Like -
Helpful -
Hug
1 ReactionI agree. Mine too!
-
Like -
Helpful -
Hug
1 ReactionAcoustic neuroma..also known as vestibular schwannoma....my tumor was a schwannoma tumor but was located on my optic nerve...it is also very rare. It was removed in 2008 but with some damage. No peripheral vision, can't use my left eye. No radiation required. Brain tumors are very scary and it is very important to have a good support group (family and friends). I wish u the best of luck
-
Like -
Helpful -
Hug
2 ReactionsHi, my name is Steve. I was Diagnosed with a 4.7cm (very large) Acoustic Nueroma Vestibular Schwanoma in March 2015 in Montana. I had it surgically removed in May 2015 at the Mayo Phoenix. Due to the skill of my Nuerosurgeons, I was able to go back to work carrying the mail 12 miles a day on foot in just 74 days. I live a wonderful life. There is hope!
-
Like -
Helpful -
Hug
3 ReactionsHi Steve
I had a 3.2 cm tumor resected by retro craniotomy at Mayo in Phoenix Sept 2018 by Dr. Bendok and Dr Wisecoft. I am 68 years old but my recovery has been steady. I am driving, working part time and back to doing a lot around the house. My experience at Mayo Clinic has been good. Everyone there has been so kind and supportive.
-
Like -
Helpful -
Hug
2 ReactionsThat is great! I had Dr Bendock, Dr Zimmerman, and Dr Barr’s. Outstanding one and all!
-
Like -
Helpful -
Hug
1 ReactionThe Mayo Clinic team works together so well. Great to hear your testmonials to the team. It's obvious to see how much they like working together in the Video Q&As they've done on Connect. Have you seen these?
> #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/
> #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/
See all Video Q&A videos here: https://connect.mayoclinic.org/webinars/ and search for #MayoClinicNeuroChat in the search box.
@spurcey, do you wear a step tracker? I'd be interested in how many steps you do a day as a mail carrier. That surely keeps you healthy.
-
Like -
Helpful -
Hug
1 ReactionI am a little concerned about water dripping occasionally only from my AN side. Had surgery in September and had MRI at Mayo 2 weeks ago. They said it looked good. Should I wait to see if it stops or contact Dr. Bendoks nurse?
-
Like -
Helpful -
Hug
1 ReactionHi @rose4622,
I'm inclined to let your doctor's office know about that as soon as possible. A call or a note on their patient portal would be a good idea today.
Doing better Teresa. Went to see my acupuncture Dr. and it has made a big difference.
-
Like -
Helpful -
Hug
1 Reaction