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.

Hi, 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!

@spurcey1

Hi, 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!

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Hi 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.

@rose4622

Hi 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.

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That is great! I had Dr Bendock, Dr Zimmerman, and Dr Barr’s. Outstanding one and all!

The 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.

I 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?

@rose4622

I 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?

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Hi @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.

@hopeful33250

Hi @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.

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Doing better Teresa. Went to see my acupuncture Dr. and it has made a big difference.

@rose4622

Doing better Teresa. Went to see my acupuncture Dr. and it has made a big difference.

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Wonderful, @rose4622. I'm glad to hear you are feeling better!

My husband had surgery for an acoustic neuroma 8 years ago this May. He had a reoccurrence last Feb. 2018 in the same area. The tumors did affect his balance, and this time his right eyelid. His tumors have been on the right side and affect the seventh nerve. In September 2018 he had a platinum implant inserted in his eyelid to allow his eyelid to close. From February to September he needed to use an eye patch and several types of drops and gel drops to lubricate his eye to block out light, sediment in the air.

Hello @dtc629,

I appreciate your sharing your husband's story about his treatments. It sounds like he has been approaching the problem in a very systematic way. Good for him and you!

How is he feeling now? Are his symptoms of balance better now and what about his vision?

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

@vickid117

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

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Good to hear from you, @vickid117. I'm glad that you are doing reasonably well since your surgery last year. It sounds as if your attitude has taken you through some difficult times and that you can be grateful for what you have.

Since your surgery, do you now hear from your right ear?

@vickid117

Hi Its me after a long time. I had my surgery June 2018. The 8th Cranial nerve was cut. This has affected my balance a lot. After reading other peoples testimonies, I feel Blessed. I do have very few lasting effects. I have found that when the barometric pressure changes, it causes the dizzy feelings more. Walking straight can be a challenge, but at least I'm still here to stagger. After losing my hearing in my right ear the sound can be deafening at times. I will say through all of my experience, there is always someone who has it worse off.

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@hey vickied117. Hello I had brain surgery March 10, 2014. My balance when the barometer changes can be devistating to my balance. I can’t tell
Where noise is coming from because I lost my hearing in my left ear due to brain tumor. It was a schwanoma. Every day is challenging. I am alive , staying positive. And thankful💕

@hopeful33250

Good to hear from you, @vickid117. I'm glad that you are doing reasonably well since your surgery last year. It sounds as if your attitude has taken you through some difficult times and that you can be grateful for what you have.

Since your surgery, do you now hear from your right ear?

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I have Phonak hearing aides. The right hearing aide tells the left one what it hears. It's confusing to know where the sound is coming from. Total hearing loss in right ear after surgery. It could be a lot worse. Keep positive all who are going through this.

@rosesareredmylove2016

@hey vickied117. Hello I had brain surgery March 10, 2014. My balance when the barometer changes can be devistating to my balance. I can’t tell
Where noise is coming from because I lost my hearing in my left ear due to brain tumor. It was a schwanoma. Every day is challenging. I am alive , staying positive. And thankful💕

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At least we can be thankful it was non cancerous. The balance problem is ongoing. It's better than what it was in rehab. The ringing in my left ear is a daily thing. Life is definitely different since the tumor removal. Best Wishes for continued healing.

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