Author Topic: If only I woukd have known....  (Read 4810 times)

thecakes

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If only I woukd have known....
« on: January 31, 2006, 05:52:16 pm »
   I remember walking to work and not being able to stay on the sidewalk.  Standing in line to punch out and  for some reason falling back and then thinking I was a nerd, and wandering why I did that.  Things like that for 6 or so years before I went to see a doctor.{never a headace though}  I had a sudden loss of hearing and a cold numbing feeling in the back of my tongue.  So off to the doctor I went.  He said to close your eyes and try to walk.  I could'nt do it at all.  It made me terribly dizzy.  If I only would of tried this at home I would of known there was something wrong.  the cakes...I had a reason for being so clutsy.

RadiantStar

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Re: If only I woukd have known....
« Reply #1 on: February 01, 2006, 01:19:00 pm »
Hi Cakes,

You are truly an inspiration after what you've been through!  What would you have done differently?   I know that my perspective is a lot different than before the AN surgery.  I read in one of your other post that you paint, I'm sure that has been great therapy for you.  It so inspired me that today, I signed up to take a pottery workshop, maybe playing in the mud will help the healing process, who knows.

Anyway, take care, have a great day.

Kathleen

Joef

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Re: If only I woukd have known....
« Reply #2 on: February 01, 2006, 02:34:41 pm »
    Yep. that's how I felt  >:( .. Doc had me walk a line like a DUI stop .. could not do it ... (I still have trouble 6 months after surgery, but I'm better) I had some numbness on my cheek, but was it on blaming dental issues ..., I started to get a fullness in my ear .. No headaches ...  thought I had a ear infection ... never question why I needed a MRI for it .. I've been a klutz by whole life .  Looking at the MRI, looks like I had an egg I my head !! I bet I've had my "friend" for 20+ years to get to a 4cm size
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Boppie

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Re: If only I woukd have known....
« Reply #3 on: February 01, 2006, 03:46:13 pm »
I have a long history of motion sickness, some falls which I was always able to see as accidents, had my husband wire a TV speaker to place on my sewing machine top so I could "hear" it late at night with the machine running.

My 85 year old mother has had hearing problems for twenty years, My now deceased father couldn't hear well, I gave up going to big meetings with my girlfriends because their voices got on my nerves.  I actually allowed my long time GP to tease me about getting old and needing a horn for my hearing when I saw him in the home!  And, I couldn't hear out of the ear!

But if my neuroma had been discovered at 4 or 5 mm, we (I and the family) would've gone crazy watching it, too!

I've spent the last twenty years believing I'd discover breast cancer and that would get me!   

matti

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Re: If only I woukd have known....
« Reply #4 on: February 01, 2006, 03:57:34 pm »
Several years prior to my AN diagnosis, I was deemed the klutz of the family. Always running into walls, tripping, etc.. Somedays I just did not feel quite right, almost like I had a couple of drinks. I started wondering if someone was slipping me something (LOL). I felt a sense of relief when I was diagnosed, because it all finally made sense. I am still the klutz of the family and I wear it proudly.

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

thecakes

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Re: If only I woukd have known....
« Reply #5 on: February 02, 2006, 06:48:22 am »
  Just testing........

stein78

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Re: If only I woukd have known....
« Reply #6 on: February 02, 2006, 11:04:22 am »
I had vertigo from time to time for years, never thougth anything of it.  Then I had fullness in my ear that I ignored for quite a while.  Went to my general doc and then ignored it some more.  Finally after a few months of going to bed with my AN ear screaming away, I finally went to an ENT and then got the MRI done and there it was.  Who knows, maybe they could have saved some hearing if I pursued things earlier...
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

becknell

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Re: If only I woukd have known....
« Reply #7 on: February 02, 2006, 11:54:31 am »
Ok, I'll add my 2 cents. For at least a decade before my husband was diagnosed,  he would get up in the middle of the night to go to the bathroom  and stumble all around our bedroom like he was drunk! Sometimes he might have had a beer or a glass of wine earlier in the evening and I always thought, Boy he sure can't hold his liquor!  :) Especially when he was tired he would be wobbly. I always thought this was sooo weird. When he was diagnosed, it all made sense. I wished that I had insisted he go to the doctor and get his balance checked, but I really had never thought much of it! Just thought he was a wobbly guy who couldn't hold his beer!!! :) Jennifer

Kathleen_Mc

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Re: If only I woukd have known....
« Reply #8 on: February 02, 2006, 05:25:19 pm »
Mt main concern was always headaches, I started with terrible headaches around age 17, then insomnia around age 18, around 19 intermittant loss of facial feeling. All these symptoms gradually become worse and the tumor was found at age 23 (the doctor's were very surprised, thought I had MS ). I do not recall there being a noticeable difference in my balance or hearing although the nerve conduction studies I had the day the found the tumor showed significant lack of functioning to these nerves. Apparently all my symptoms were related to what the tumor was doing outside of the auditory canal and I guess it grew so small I didn't notice the gradual hearing loss and the other vestibular nerve compensated. Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Sanddollar

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Re: If only I woukd have known....
« Reply #9 on: February 05, 2006, 08:45:37 am »
I think that I was lucky because my symptoms manifested themselves over a 6-8 month period.  All were new to me - muffled hearing problem, drunken walking.  This made me pursue the issue more aggressively.  My take-away from all of this - don't ignore your body.  When some atypical symptom pops up, hammer away at getting a diagnosis that makes sense. 

Meet the newest member of the hypochondriac society!   :D
1cm x 2cm, Left side -Translab
Drs. Vrabec & Trask - Jan '06
Houston, TX
Excellent Results!!!

thecakes

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Re: If only I woukd have known....
« Reply #10 on: February 06, 2006, 09:01:33 am »
    Right on sanddollar!