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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.

rose4622 | @rose4622 | Aug 30, 2018
In reply to @vickid117 "I can tell you, do whatever the doctors tell you. I had my surgery at John..." + (show)
@vickid117

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.

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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.

REPLY
3 replies
vickid117 | @vickid117 | Aug 25, 2018
In reply to @hopeful33250 "Hello @vickid117 and welcome to Mayo Connect! First, let me express my sympathies to you on..." + (show)
@hopeful33250

Hello @vickid117 and welcome to Mayo Connect!

First, let me express my sympathies to you on the loss of your husband. As if often the case, caregivers tend to put aside their own health needs when caring for a loved one.

I appreciate your sharing your story of surgery for the acoustic neuroma. Could you tell us what type of surgery you had (gamma knife, etc.)?

I would like to invite some other Members to post with you. They have recently had a similar surgery, @dnonnie, @kkkk, and @wegotthis.

Jump to this post

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.

REPLY
1 reply
vickid117 | @vickid117 | Aug 24, 2018
In reply to @vickid117 "Hi. I just had acoustic neuroma surgery on June 8th,2018. I have went for vestibular therapy...." + (show)
@vickid117

Hi. I just had acoustic neuroma surgery on June 8th,2018. I have went for vestibular therapy. I am having balance issues. As well as balance issues, I lost total hearing in my right ear after surgery. I was diagnosed 2 years ago. They were going to wait and watch it's growth. My husband's health had declined and I put myself aside to take care of him. He passed last August. I was supposed to go for an MRI last year and didn't. After the funeral I went and had an MRI because dizzy and ringing of the ears was really getting bad. At that point the tumor had grown and started to cause more symptoms. Radiation would not help with my balance issues. The doctor felt the surgery would be the best way to go.It is an ongoing struggle, but I'm not a quitter. Just ordered hearing aides yesterday. Been out of work for almost 3 months. Just started driving small distances a week ago. Every experience is different. Would love to hear from anyone who is currently experiencing after surgery life. Best Wishes to you who are just starting this journey.Just remember we can beat this tumor.

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They said about a week.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 24, 2018
In reply to @vickid117 "Hi. I just had acoustic neuroma surgery on June 8th,2018. I have went for vestibular therapy...." + (show)
@vickid117

Hi. I just had acoustic neuroma surgery on June 8th,2018. I have went for vestibular therapy. I am having balance issues. As well as balance issues, I lost total hearing in my right ear after surgery. I was diagnosed 2 years ago. They were going to wait and watch it's growth. My husband's health had declined and I put myself aside to take care of him. He passed last August. I was supposed to go for an MRI last year and didn't. After the funeral I went and had an MRI because dizzy and ringing of the ears was really getting bad. At that point the tumor had grown and started to cause more symptoms. Radiation would not help with my balance issues. The doctor felt the surgery would be the best way to go.It is an ongoing struggle, but I'm not a quitter. Just ordered hearing aides yesterday. Been out of work for almost 3 months. Just started driving small distances a week ago. Every experience is different. Would love to hear from anyone who is currently experiencing after surgery life. Best Wishes to you who are just starting this journey.Just remember we can beat this tumor.

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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?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 24, 2018

@rose4622 Yes, I'm sure that you will be happy to have this over. I will be thinking of you during this waiting time.

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rose4622 | @rose4622 | Aug 24, 2018

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!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 24, 2018
In reply to @hopeful33250 "@rose4622 Hello Rose I appreciate the courage you have as you face surgery. Your fears are..." + (show)
@hopeful33250

@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?

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@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?

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rose4622 | @rose4622 | Aug 24, 2018
In reply to @hopeful33250 "@rose4622 Hello Rose I appreciate the courage you have as you face surgery. Your fears are..." + (show)
@hopeful33250

@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?

Jump to this post

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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 24, 2018

@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?

REPLY
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