Author Topic: What would you like others to know?  (Read 4675 times)

Alix May

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What would you like others to know?
« on: May 28, 2015, 07:08:07 pm »
I've been posting facts about brain tumors on my Facebook throughout the month (AN-specific facts during ANAwareness week), and I thought I might end up the month, rather than posting statistics/data/etc., what people with AN might want others to know about having an AN/brain tumor?

One from me might be: if it seems like I am zoning out during a conversation, it's not that I'm not interested in what you're saying, I'm just either tired and/or distracted by vertigo or ringing.
4mmx6mm inferior vestibular branch
diagnosed 1/30/15

Janey

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Re: What would you like others to know?
« Reply #1 on: May 28, 2015, 10:07:51 pm »
I think I would like those around me to understand that although I am nearly SSD, noise like
the radio or television blarring is very unsettling!!!  Sometimes people assume that since you
can't hear very well, loud noise shouldn't be too bothersome. 

Alix May

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Re: What would you like others to know?
« Reply #2 on: May 29, 2015, 07:10:42 am »
Thank you, Janey, I'll definitely note that!
4mmx6mm inferior vestibular branch
diagnosed 1/30/15

mac84

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Re: What would you like others to know?
« Reply #3 on: May 29, 2015, 09:50:39 am »
Amen to what Janey said....and I'd add that even though my AN ear is down 60% it seems like loud sounds just aggravate me so much more! 
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

Jill Marie

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Re: What would you like others to know?
« Reply #4 on: May 29, 2015, 08:33:37 pm »
Good idea Alix May,

I would want people to know if they are curious about how I look, why my eye appears to water a lot (its actually ointment), why I don't smile, etc., just ask, more then happy to explain it to you, it will make us both feel a lot more comfortable with each other. 

For the most part we are the same people we were before the AN except that we tend to be more understanding of others with medical issues then we were before. 

If I think of something else I will let you know!  Jill Marie 8)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Soundy

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Re: What would you like others to know?
« Reply #5 on: June 08, 2015, 07:05:38 pm »
I could write a book. But won't

1. When you talk to me you don't have to talk a lot louder into my face. It doesn't help. If I need to turn my head to hear better I will turn my head.

2. Being SSD and a wonky wobbly walker doesn't mean I am helpless. I may need some help sometimes but I don't exspect or want you to take over things for me. Allow me to try to do for myself first

3. I try to keep upbeat but sometimes I am going to be sad or depressed. Let me mourn what was lost the same way you would allow a cancer or accident victom to mourn the loss of a leg or breast.

4. I am still the same person. Different in ways but still me.
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

TNMTMAMA

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Re: What would you like others to know?
« Reply #6 on: June 17, 2015, 09:01:24 pm »
I am the caregiver and maybe I am not "normal." While loving and supporting my hubby, I would like others to know that I will ask for help when I need it. We are 6 days out from surgery. Many friends and family are INSISTING they will come to the hospital. While they mean well, it is only adding to my anxiety. Everyone handles this in their own way. I don't need a crowd...with people pacing the floor and looking at their watches. I cannot be the perfect hostess for a 15+hour surgery day...so when I tell you that I need to be alone...please respect my wishes...and do not pout. My desire for private time is not meant to be a personal insult. I need your support (from afar) at this time. I also need your patience. When I know something more, and when I am ready, I will call you.

Alix May

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Re: What would you like others to know?
« Reply #7 on: June 21, 2015, 08:22:54 am »
TNMTMAMA, yep, introverts tend to do better alone, or with one close person - I suspect my husband will have his mom or twin sister, or be alone. I hope you can make them respect your wishes.
4mmx6mm inferior vestibular branch
diagnosed 1/30/15

 


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