Author Topic: No one asks anymore....  (Read 27427 times)

moe

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Re: No one asks anymore....
« Reply #60 on: June 15, 2010, 01:04:49 pm »
Another thing I must add here ;D

I'm feeling isolated and haven't made any good friends since we moved to WA 3 summers ago. I found out about the AN when I lived in TX with my kids while husband was stationed in Bremerton, WA.
Had the surgery, went back to TX for one year, and then moved here. So all my friends back in TX who knew about my condition were very supportive and I miss them!

Being new here, (funny, I still feel new, but I've been here 3 years!)  I feel more socially isolated. We live on acreage, not in a neighborhood, and I just am not social anymore because it takes so much emotional energy with the tinnitus/deafness in restaurant and loud places-what's the point? I don't enjoy myself, I try and put on the happy face, I'm interested in what you are saying if I concentrate real  hard ,kind of face. ::)  I'm exhausted when I get home, and basically go to sleep. kinda sucks

 I do have some coworkers who are empathetic, but no one really gets it.

So I'm so glad for this forum. And I'm looking forward to the support group meeting here near Tacoma this Saturday... Anyway, for me, no one really asks anymore, because no one knows!
Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

yardtick

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Re: No one asks anymore....
« Reply #61 on: June 15, 2010, 06:32:58 pm »
Maureen,

I have lived in my survey since June of 1988 and to this day I still feel isolated.  I just mentioned to my husband tonight about how weird it is that we have three set of new neighbours in a matter of two and a half years.  When we moved into the neighbourhood, we were the only couple with a baby, everyone had kids in high school or the home owners were retired.   Our area is also ethnically divided with Italian immigrants and Serbian immigrants with Louie and I both first generation Canadian, so socializing never occurred.  Now a few have past away and my next door neighbours' youngest son is 5.  It's nice to hear children's laughter especially when grandchildren from other neighbours are visiting.  I guess it really doesn't matter if you live in the city or more of a rural community, sometimes people just do not seem to be very neighbourly.   

I do realize I haven't moved from a province or state to another, so I do have my family base and a few close friends.   Maureen we do have each other here on the forum and I will never forget you sending me the oils for my headaches, I just read the card you enclosed the other day!  :-*

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

moe

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Re: No one asks anymore....
« Reply #62 on: June 15, 2010, 11:42:00 pm »
Thanks Anne Marie,
Funny you should mention those oils. I had NO idea that your headaches and facial pain were so bad when I first met you on the forum  and sent my extra roll on aromatherapy oils.
Kind of like sending tylenol for someone who suffers from  migraines! But needless to say, I'm sure you're enjoying the aroma, even if it doesn't do anything for your major headache! :o
Hang in there, and keep the humor whenever possible! (love the emails ) :-*
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

k92girl

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Re: No one asks anymore....
« Reply #63 on: June 16, 2010, 10:30:29 am »
Hi Moe!
I just sent you an email from my regular email account(hope you got it!)...then I found this. Sounds like you have been through sooooo much! Hopefully this is a new beginning for you! Please let me know how you are feeling & your progress from the surgery. It has been a little over a month now right? I totally understand & can relate to the feeling of being socially isolated(your post from yesterday) not because of where I live but & to quote you "I just am not social anymore because it takes so much emotional energy with the tinnitus/deafness in restaurant and loud places-what's the point? I don't enjoy myself,  I try and put on the happy face, I'm interested in what you are saying if I concentrate real  hard ,kind of face. " I just feel uncomfortable & out of place.  WOW so nice to hear these words that I am thinking that no one gets!! But you do! I don't mean to sound ungrateful or sound like a constant complainer...just nice to have someone who you can relate to!  :)  I am so blessed!! We seem to share a lot of the same problems, although my facial nerve was intact there was slight paralysis but nothing like what you have had to deal with! Are you still working? Unfortunately I was not able to return to work & have been on disability since my surgery...that was hard to take! But again I have many blessings just get frustrated some times...just wish I could chase my girls around the house like I use to (they are 16 & 21(in July) & walk on the beach or any where with out holding on to something or someone!  :( I have edited my story a little after re-reading...I was first diagnosed in May "03" & told it was a very small tumor & that people live with these for a long time with no problems & that they don't usually get very big & since I was young(47) & so healthy I would probably be fine. Was told to report any changes to my DR. For the most part I was doing ok except for the feeling like my ear was plugged up & the constant ringing in my ear. Until about 2 years later in May of 05 when I almost blacked out in my classroom one day...I use to teach preschool, taught for 10 yrs. I went to the Dr. & was referred to specialists to find out the tumor had grown & needed to be removed. By the time they did my surgery, the tumor was pressing on my brain. Surgery was 14 hrs. a translabyrinthine resection on the right side, was on Aug. 5 2005, to remove a 3cm plus skull base neuroma. The tumor was removed & all had appeared to have gone well, no damage to facial nerve...until 4 days after when I couldn't close my right eye. Dr.'s said it was probably due to post op nerve damage. For lack of really knowing why... Had to begin seeing an ophthalmologist & had a tiny gold weight placed in my eyelid so my eye would close. The weight was in for about a yr. until my eye was able to close, almost completely with out the weight.I also have some nerve damage on the right side of my face, kinda like when you have had a shot of novacaine. It feels like it is pulled down but people say it isn't noticeable...just annoying & uncomfortable. Along with this I was left with balance problems.(disequilibrium) I had vestibular therapy for 1 yr. & I still use a walker or cane or have to hold on to some thing,loss of hearing in the right ear & tinnitus,facial weakness,metallic taste in mouth,eye problems...severe dry eye & had to have cataract & lens replacement surgery, & fatigue. Besides the balance problems my biggest complaint is the pressure I have in my head & across my nose & under my right eye...always there & sometimes unbearable!! Feels like I got punched right between the eyes!! Never imagined anything like this would happen!  Look forward to hearing from you! You are truly a blessing to many & so positive! Prayers my friend you are an uplifting lady who has reminded me I have so much to be thankful for!
Be blessed :)

moe

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Re: No one asks anymore....
« Reply #64 on: June 16, 2010, 11:12:36 am »
Yes I got your email and will respond.
Thanks for the kind words, they mean a lot!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

ddaybrat

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Re: No one asks anymore....
« Reply #65 on: June 27, 2010, 09:48:19 pm »
K92GIRL - I totally understand what you are going through.  I could have written your last post except that it's my left side, not my right.  I live with my daughter and her family.  I stay in my room most of the time because the normal sounds around the house drive me crazy...she has 6 and 7 year old girls and a 12 year old son.  They are good kids, but fight and scrap like all brothers and sisters.  Between them and the tv, it's too overwhelming for me to deal with.  My daughter understands, but it's hard missing out on the life outside my door.

My prayers are with all of you...hugs, Pat
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid