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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.
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Yes! what was the out come and how did the surgery go?
I am having a ct scan thurs as my Mayo Dr suspects I have a tumor in my ear canal. Had never heard of this but losing my hearing in one ear. Looking for info on this, Thanks
Hi @user_chea8a92a
You might consider starting a new discussion in the Brain Tumor group with the title Ogliodendroglioma. It will help to bring everyone who has experience with this type of tumor to one place. Here's how to start a new discussion.
1. Go to the Brain Tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/
2. Click START A DISCUSSION.
3. Enter a title on the topic you want to discuss. For example "Ogliodendroglioma - Anyone else?"
4. Write your message.
5. Click CREATE DISCUSSION.
Hi @saucy
I encourage you to join this discussion about acoustic neuromas https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/ where other Connect members are talking about their experiences.
You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/
What questions might you have as you prepare for your appointment on Thursday?
Thank you, I read they are relatively rare. I am having hearing loss but have the CT scan at Mayo thurs.
Hello @user_chea8a92a I'm Scott. My wife had an ogliodendroglioma. I'd be willing to share what I learned from being her caregiver if that would help or be of interest.
Always looking for anyone who has an ogliodendroglioma!! Guess no one on this site!
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1 Reaction@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)
Has anyone ever heard or had this type of tumor?
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.
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