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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@rose4622 Hello Rose
I appreciate the courage you have as you face surgery. Your fears are certainly understandable, though.
Will your surgery be done at Mayo in Arizona? Did your doctor give you a name for the type of surgery he/she will be doing?
Yes my surgery will be at
Mayo in AZ in Sept. Don't have exact date yet. The surgery is called Retrosigmoid. Craniotomy. I have met my surgeons and they are very experienced and kind.
@rose4622 Hi Rose:
Thank you for the additional information about your surgery. This is often called "Keyhole Surgery" and sounds like a minimally invasive type of brain surgery to remove a tumor. Here is some information from John Hopkins:
Keyhole Brain Surgery (Minimally-Invasive Retro-Sigmoid Craniotomy)
What is a "keyhole" craniotomy?
Retro-sigmoid craniotomy (often called "keyhole" craniotomy) is a minimally-invasive surgical procedure performed to remove brain tumors.
Types of brain tumors treated with "keyhole" craniotomy:
The retro-sigmoid craniotomy is one of many treatment options for brain tumors. It may be performed for the following types of brain tumors:
Acoustic neuromas (vestibular schwannomas)
Meningiomas
Metastatic brain or spine tumors
Skull base tumors
Benefits of "keyhole" craniotomy:
Retro-sigmoid craniotomy results in: Less pain than an open craniotomy, Faster recovery than an open craniotomy, Minimal scarring
Types of brain tumors treated with "keyhole" craniotomy:
The retro-sigmoid craniotomy is one of many treatment options for brain tumors. It may be performed for the following types of brain tumors: Acoustic neuromas (vestibular schwannomas),
brain or spine tumors
Here is a link with the entire article, https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/brain_tumor/treatment/surgery/key-hole-retro-sigmoid-craniotomy.html
I am glad that you met the surgeons that you feel they are experienced and kind. What a great combination for doctors!
Will you provide updates as you get closer to the surgery date?
Yes I will. The Acoustic Neuroma is 3.3 cm and is putting pressure on the brain stem. That is what is causing pain I think. Also having balance problems and loss of all but 10% hearing in my right ear. I will be so glad when this surgery is behind me!
@rose4622 Yes, I'm sure that you will be happy to have this over. I will be thinking of you during this waiting time.
Thank you.
I'm tagging a few members who have had surgery for acoustic neuroma, like @rosesareredmylove2016 @saucy @cynaburst @estherhg @dgosney23. I hope they will join the conversation to share their experiences along with yours.
Vicki, how long will it be before you get your hearing aides?
They said about a week.
I can tell you, do whatever the doctors tell you. I had my surgery at John Hopkins downtown Baltimore. My surgeon was excellent. The first 2 days I have no memory of much. I was sedated and didn't feel or remember anything. I can honestly say each day wasn't great, but I kept this thought in the back of my mind.My tumor wasn't cancerous, there is someone worse off than me, and this won't last forever.Having a good support system at home, helps a great deal. Remember to rest as much as you can. The rest will help you heal and have a better outcome. I was in the hospital for 1 week. My surgery was over 71/2 hours long. I had to be the one with an unusual situation. Tumor wrapped around something. While in hospital I had physical therapy. My son would walk the hallways with me. They told me the dizzier I made myself, I would get better faster.I had difficulties swallowing after surgery. Another symptom I never had before surgery. No two bodies are the same. Believe me I googled everything about acoustic neuroma I could find. It will be 3 months on Sept 8th since my surgery. I am currently dealing with the dizzy feelings and swallowing, not to mention total hearing loss in my right ear since surgery. Getting hearing aides in about a week.All in all I am thankful to be tumor free. I didn't mention I've been out of work for almost 3 months. Getting ready to go back in 2 weeks. Just started driving small distances. Remember every situation is different. You may not experience any issues. I just like to know what could happen. Prayers certainly helped. Wishing you success. I will keep you in my prayers.
Thanks for sharing Vicki. My surgery is September 10. I am 68 years old and my AN is 3.3 and appears to have cysts attached. Hoping no complications. I don't do well with anesthesia. I have read alot of patient experiences, some positive,some quite negative. I trust that i have 2 of the most experienced surgeons and a strong faith in God. My family is also very supportive. This helps alot.