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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 | Oct 28, 2018
In reply to @hopeful33250 "Oh, how very nice for you, @rose4622. It sounds like a delightful day! I'm so pleased..." + (show)
@hopeful33250

Oh, how very nice for you, @rose4622. It sounds like a delightful day! I'm so pleased that you got out and had a post-surgery milestone of driving 7 miles. How nice for you to be able to get out with your husband. I'm sure the colors were just beautiful.
Is you sinus infection clearing up?

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Yes Teresa nettipot appears to be helping.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2018

Glad to hear that, @rose4642

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2018
In reply to @vickid117 "Thank you for the encouragement. Everything you've said, I have experienced. I lost my husband August..." + (show)
@vickid117

Thank you for the encouragement. Everything you've said, I have experienced. I lost my husband August of 2017. My AN grew the year I was taking care of my husband. I put myself on the back burner. Went for am MRI and my tumor had grown. Had surgery. Lost complete hearing on right side. Balance and dizziness are a daily struggle. I don't regret taking care of my husband. I wouldn't trade that year for anything. I know for a fact God never gives you more than you can handle. I was married almost 34 years to a wonderful man who was wheelchair bound. I thank God he is now free from that chair that bound him. There's always someone worse off. A good motto to remember.

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Hello @vickid117

I am so sorry to hear of the loss of your husband. How wonderful that you had such a good marriage and that you have such good memories of your time together. I would like to take this time to invite you to our discussion on Loss and Grief: How are you Doing?
Here is the link to that discussion, https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/

I would love to have you post about your grief experience there. It sounds like you have approached your loss from a position of strength and I admire that.

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rose4622 | @rose4622 | Oct 28, 2018
In reply to @vickid117 "Thank you for the encouragement. Everything you've said, I have experienced. I lost my husband August..." + (show)
@vickid117

Thank you for the encouragement. Everything you've said, I have experienced. I lost my husband August of 2017. My AN grew the year I was taking care of my husband. I put myself on the back burner. Went for am MRI and my tumor had grown. Had surgery. Lost complete hearing on right side. Balance and dizziness are a daily struggle. I don't regret taking care of my husband. I wouldn't trade that year for anything. I know for a fact God never gives you more than you can handle. I was married almost 34 years to a wonderful man who was wheelchair bound. I thank God he is now free from that chair that bound him. There's always someone worse off. A good motto to remember.

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Vicki I am so sorry you lost your husband! Don't know how I would manage this without him! We will be married 43 years the 31st. My office keeps calling. I need to go back to work soon but fear my memory will affect it. I will talk to my Dr about it this week. Don't like my new normal but am thankful to be alive. Ok balance one day and way off others.

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mrector | @mrector | Oct 29, 2018
In reply to @vickid117 "Thank you for sharing. I had surgery in June 2018. Lost hearing in right ear. Got..." + (show)
@vickid117

Thank you for sharing. I had surgery in June 2018. Lost hearing in right ear. Got Phonak hearing aides. Right aide tells left side what it hears. I'll hear sounds and not know where it's coming from. Life has certainly changed for me. Lots of dizzy floating days.. Through everything I am thankful to still be here. Things that used to be fun, seem to be a struggle at times. Went back to work 3 days a week. 4-5 hour shifts. Energy level has been affected. Really wish I had someone to share these symptoms with who has experienced them as well. Some days the balance can be a real struggle. Is it possible to have symptoms worse than ones from the beginning. I have had good days, don't get me wrong. I refuse to let this new way of life defeat me.

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I had brain tumor removed Aug 2018. I have lost vision in my left eye. I struggle with dizziness and balance and double vision. Some days are good but other days I struggle. My energy still hasn't returned to normal. I am taking one day at a time and just thankful to be here. I still have 15% of the tumor left due to it being wrapped around my carotid artery and optic nerve so this is my new normal.

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vickid117 | @vickid117 | Oct 30, 2018
In reply to @mrector "I had brain tumor removed Aug 2018. I have lost vision in my left eye. I..." + (show)
@mrector

I had brain tumor removed Aug 2018. I have lost vision in my left eye. I struggle with dizziness and balance and double vision. Some days are good but other days I struggle. My energy still hasn't returned to normal. I am taking one day at a time and just thankful to be here. I still have 15% of the tumor left due to it being wrapped around my carotid artery and optic nerve so this is my new normal.

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So true. Everyday is a new adventure. I noticed when the barometric pressure changes, my dizziness is worse. I googled this and it really is something that can happen. A coworker told me about this and migraines she experiences. Life has sure changed. My safe place is when I'm home. The dizziness and balance seem to be bearable at home, if that makes any sense. I'm now having sensations of things trying to heal behind my ear. I miss my hearing the most. My Phonak hearing aides help, but the hearing loss is still a struggle. I am thankful to have this behind me. Just making the most of each day. Just remember you might have a bad day, but a good day is around the corner. Just keep pressing on. Our lives are fleeting.Tomorrow is not promised so make the most of today.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Oct 31, 2018

I have not had surgery for my AN as it has stayed small. My balance and dizziness are also a result of the subtotal temporal bone resection I had in 2012 on the opposite side for the squamous cell carcinoma growing there. Weather and sinus pressure definitely affect my symptoms. The most amazing part of this recovery has been seeing the way that the brain heals and retrains itself to accommodate for the changes and deficiencies that are the result of surgery. Mayo nurses and doctors told me to be patient, and continue to challenge myself to allow the brain to retrain to what is needed. Just simple things like walking on an uneven surface, and moving my head side to side while walking have been exercises to help to make improvements. And vision is a major part of balance, so darkness or any loss of vision is also a challenge. As a veterinarian I know that nerve tissue is the slowest tissue to heal, and here I am 6 years later, still seeing changes and improvements in my condition. It will likely never be normal, but the new normal is tolerable with some adaptations. As for surgery recovery time, it seems to get longer the older I get. At the age of 62, it took a full year to feel "normal" again after my last thoracotomy. My stamina has never returned to what it was. So give yourself time, continue to challenge your brain by doing the things that you have difficulty doing, and expect that there is still time for improvement. Try not to get discouraged. You are still alive.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 31, 2018
In reply to @sepdvm "I have not had surgery for my AN as it has stayed small. My balance and..." + (show)
@sepdvm

I have not had surgery for my AN as it has stayed small. My balance and dizziness are also a result of the subtotal temporal bone resection I had in 2012 on the opposite side for the squamous cell carcinoma growing there. Weather and sinus pressure definitely affect my symptoms. The most amazing part of this recovery has been seeing the way that the brain heals and retrains itself to accommodate for the changes and deficiencies that are the result of surgery. Mayo nurses and doctors told me to be patient, and continue to challenge myself to allow the brain to retrain to what is needed. Just simple things like walking on an uneven surface, and moving my head side to side while walking have been exercises to help to make improvements. And vision is a major part of balance, so darkness or any loss of vision is also a challenge. As a veterinarian I know that nerve tissue is the slowest tissue to heal, and here I am 6 years later, still seeing changes and improvements in my condition. It will likely never be normal, but the new normal is tolerable with some adaptations. As for surgery recovery time, it seems to get longer the older I get. At the age of 62, it took a full year to feel "normal" again after my last thoracotomy. My stamina has never returned to what it was. So give yourself time, continue to challenge your brain by doing the things that you have difficulty doing, and expect that there is still time for improvement. Try not to get discouraged. You are still alive.

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Thank you for those wise words, @sepdvm, and good perspective!
We all expect to get over these major problems quickly, but that is not the case and especially so as we grow older.
What areas have shown the most improvement for you?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Oct 31, 2018

@teresa, my balance has shown the most improvement over the years. From using a cane to pretty much doing what I used to, minus extra head movements, there has been a lot of progress. I also started yoga classes for additional balance challenges. There are a few things I just cannot do, but yoga provides an ongoing exercise for strength and balance. I have noted that if I am inactive for a long period, then I don't feel as confident in my movements. Also there are just bad days where dizziness may prevail due to weather, etc.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 31, 2018
In reply to @sepdvm "@Teresa, my balance has shown the most improvement over the years. From using a cane to..." + (show)
@sepdvm

@teresa, my balance has shown the most improvement over the years. From using a cane to pretty much doing what I used to, minus extra head movements, there has been a lot of progress. I also started yoga classes for additional balance challenges. There are a few things I just cannot do, but yoga provides an ongoing exercise for strength and balance. I have noted that if I am inactive for a long period, then I don't feel as confident in my movements. Also there are just bad days where dizziness may prevail due to weather, etc.

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You bring up an important point, @sepdvm. I have Parkinson's and I feel the same way about exercise. If I don't exercise for several days (Tai Chi is my exercise of choice for balance) I really notice the difference. My gait and balance really suffer.

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