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Author Topic: Dementia/memory loss  (Read 3054 times)

Hannahvhart

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Dementia/memory loss
« on: January 31, 2024, 11:14:38 am »
Hello, my name is Hannah. I was 11 years old when I had my acoustic neuroma surgically removed. It was 2cm long and 11/2cm across. It was located on the left side. I am 23 years old now and I’m suffering from significant memory loss. I cannot remember names, I forget how to spell words. It’s become a big problem in my life. I was wondering if being deaf in one (or both) ears can cause some of your brain to “deactivate”” causing this memory loss. Has anyone else experienced this? Is there anything I can do to help?
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donjehle

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Re: Dementia/memory loss
« Reply #1 on: February 04, 2024, 05:24:32 pm »
Hi Hannah, and thanks for sharing your experience on the Forums!

I am so sad that you had to experience an acoustic neuroma as an 11-year-old!  My heart goes out to you.

Now a dozen years later, you are a veteran here on our Forums!

I am not a physician, but I am not aware of this being a common side effect of AN surgery.  Did your memory loss just start recently?  Or have you had it for a while?

Hopefully, others who have had surgery a dozen or more years ago can comment on their experience with memory loss, and if they have had any success with minimizing any memory loss.

Best wishes on your journey!
Don
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Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Jill Marie

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Re: Dementia/memory loss
« Reply #2 on: February 04, 2024, 11:02:05 pm »
Hi Hannah,  I was 36 when I had my tumor surgery and I will be 67 in a week.  I'm completely deaf in my left ear due to the surgery.  I haven't had any memory loss because of being deaf.  I hope you are able to find someone that can help you figure out why you are having memory loss.  I know I have read about others on the board having memory loss issues, hopefully as Don said some will post to give you ideas on what could be causing it and how to help alleviate the problem.

Please let us know how you are doing and what you learn.  Jill Marie  :)
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Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Hannahvhart

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Re: Dementia/memory loss
« Reply #3 on: February 05, 2024, 06:27:42 am »
Hi everyone, thanks for your comments! I’m glad not a lot of people are struggling with memory loss. I appreciate your response very much! Every bit helps!
In response to Don, I have been battling with very minor memory loss up until the past year. It has gotten tremendously worse. I’ve went to the doctors but they haven’t had much to say on the matter. Others understanding what it is like to have an acoustic neuroma are much easier for me to relate to!
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Groylance

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Re: Dementia/memory loss
« Reply #4 on: February 11, 2024, 10:39:22 pm »
Hi, Hannah! I had my surgery just over 3 years ago and my memory is getting pretty frustrating. I’m 38, and worried that I won’t be able to stay in my career if it keeps deteriorating. I guess all we can do is hang in there.
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mwatto

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Re: Dementia/memory loss
« Reply #5 on: February 25, 2024, 02:32:49 am »
Hi Hannah I had cognitive issues post Covid - was pretty bad for almost 10 months. I wonder if you might have a post viral issue? I do know that hearing is very important and we also need vision to prevent dementia- my audiologist explained to me the brain needs sensory input why ear plugs that block all noise are bad - best to muffle them if need be.  Keep retraining your brain with smell, touch, sounds. When I lost me smell post Covid I did this basiaclly all day and my smell returned. You are young enough for brain plasticity. Take up chess, walk outdoors, listen to music (classical good as complex) etc. Chat to a good naturopath re neuro inflammation maybe. There are some great supplements to boost brain activity and protect it. Exercise keeps the brain well nourished also.
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Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Director

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Re: Dementia/memory loss
« Reply #6 on: February 26, 2024, 10:22:59 am »
Hi Hannah,

Thanks for posting on the ANA Forum, you'll find a great community here.  The ANA has many resources for young adults as well as resources to help you navigate cognitive and emotional issues. You can find more information about our Young Adult community here: https://www.anausa.org/community/young-adult

The symptoms, diagnosis and treatment options for acoustic neuroma can significantly challenge cognitive and emotional states. Fatigue, depression, relationship challenges, difficulty concentrating, and memory issues are potential side effects.

The ANA provides resources to help, including articles in our newsletter, NOTES, connecting with peer mentors for one-on-one support, and our booklet, Understanding Emotional, Cognitive and Behavioral Changes.  We also have videos available on this topic in our video library, search by keywords, cognitive/emotional issues.

www.ANAUSA.org

Thanks again,
The ANA Team
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