Author Topic: Newbie Here  (Read 3469 times)

MichelleW

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Newbie Here
« on: November 19, 2018, 04:04:17 pm »
Hello everyone,

I was diagnosed in September 2018 after having hearing loss and tinnitus. My AN is 6mm and I am on W&W with a follow-up hearing test in Feb & MRI in March.  I feel weird brain zaps in my head at times, tinnitus is so bad at times that I don't know what sounds are real or not and I feel like I just cannot remember certain things. I am so worried that this will start to affect my job. I am a database manager, and already find myself thinking I did something, and then just forgetting about it.  It is getting pretty scary and so unlike me. I am not sure if it is just stress, the tumor, or if I am completely losing my mind. It is also the weirdest experience to just gradually lose your hearing. I am so thankful to read posts on this forum, because no one I know can understand what I am going through.  I have started to drink coffee in the last 6 months because sometimes I cannot keep my eyes open. Are any of you experiencing weird side effects pre-op?

Thanks for listening!

Michelle

CHD63

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Re: Newbie Here
« Reply #1 on: November 20, 2018, 05:22:56 am »
Hi MichelleW and welcome to this forum .....

One of the very frustrating things about having an AN is the variety of symptoms and intensity of them, seemingly unrelated to the size of the AN.  The location of it seems to be more related to symptoms.

Although I am post-treatment, in my case, caffeine definitely makes the tinnitus worse so you might want to try to reduce the coffee intake and see if it helps with the loud tinnitus.

As hard as it seems to do, try to minimize your stress from having an AN.  As I am sure you are aware, stress makes everything worse.  For me, I find focusing on a new project keeps my mind distracted, which has been helpful.

We are here for you so keep coming and vent your worries in a place where we understand the fears you are having.

Best wishes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

MichelleW

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Re: Newbie Here
« Reply #2 on: November 20, 2018, 09:04:18 am »
Thank you so much! I am grateful to have a place to feel understood.

jami

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Re: Newbie Here
« Reply #3 on: November 20, 2018, 06:25:54 pm »
HI MichelleW,

I appreciate your post! I was diagnosed July 2018, after (much) facial tingling. Turns out i had years of balance issues (thought I was getting older...) and hearing issues (thought it was wax).

10.5 hour surgery on 8/14/2018, etc (another story) BUT....

A few weeks after the surgery, I had such a jolt recognizing how it had impacted my job. BEFORE - I worked 10+ hour days, usually on phone calls, ran a global org providing support for 70K plus employees, traveled internationally 40% of the time..  AND I was taking credit for things I did not do, forgot details, BUT i was the person that noticed more than most.I I was ready for bed at 8, felt hungover most of the time, etc.

Now I am back at work (another entire post), but if i could talk to my July 2018 old self I would say...
-You notice the gaps more than anyone else. So give yourself a break.
-Find the things in your life that are awesome, and spend more time on them.
-LISTS LISTS LISTS> I still write lists ALL the time. I have notes in notebooks, envelopes etc. Write it down and let go of the detail.
-Forgive yourself for the Wonky Brain items.
-Take care of yourself. Walk as much as you can, even 5 min before/after work makes a big difference for your brain.
-Breathe. Try the app CALM.
-Work will always be there. Always.

Virtual hug - its still tough, and its not just you, The brain is a wonderful thing.
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

MichelleW

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Re: Newbie Here
« Reply #4 on: March 22, 2019, 11:30:39 am »
Thank you Jami! I needed to hear all of this!!

 


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