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Author Topic: Alot to worry about  (Read 8209 times)

Kaybo

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Re: Alot to worry about
« Reply #30 on: April 19, 2009, 05:53:53 pm »
Actually, not really - I only played it in elementary school!  Gave up music for athletics and then got hurt!!  Go figure...
K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

moe

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Re: Alot to worry about
« Reply #31 on: April 20, 2009, 09:45:05 am »
HIJACKED!
Patty,
That is what happens a lot when the subject totally changes. Funny how it happens.
From people being "furniture" to "orchestra"  and then to find out that K played the viola!
It is all in good fun.
Welcome, and it sounds like you are doing better, and that all this good advice/personal experiences of others  has helped you.
There is humor here. If you don't laugh, you'll cry. (Okay, so I do a little of both :'( )
I am post op almost 3 years, and never used the forum during the process and post op due to crazy life surrounding the AN.
So  now  I like to hang around and follow the newbies and give advice when I can .
Keep venting. tis good.
Maureen


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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

bell

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Re: Alot to worry about
« Reply #32 on: April 23, 2009, 09:37:21 am »
Patty,
 Are you logged in?  I went to Dr. LInk and Driscoll at Mayo, Mn.  Nov. 21st buger came out,  when is your app.  I would be willing to drive down and meet you, I only live 1 1/2 hours away for MAyo.
You are in great hands, the doctors are great and so is St. Marys hospital.     
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alwaysthere

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Re: Alot to worry about
« Reply #33 on: April 23, 2009, 10:49:34 am »
Bell,

  It's nice to hear from someone who has been there. I will try and send you a pm.

Patty
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Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

grega

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Re: Alot to worry about
« Reply #34 on: April 23, 2009, 11:22:19 am »
Hi Patty ...... as others have said, the waiting can be tough.  Same for me back in '04 prior to my retrosig AN.  But since then, I've tried to live every day as fully as possible, and try not to think of SSD, etc.  Hope you're able to do that, with help from friends here.

Maureen recently said. "So now I like to hang around and follow the newbies and give advice when I can."  What'll she think ....3 "newbie" posts in a row .... probably doesn't happen too often.

Keep smiling .... at least give someone one of yours, as they might need it more.
Greg
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1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

moe

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Re: Alot to worry about
« Reply #35 on: April 24, 2009, 02:50:35 pm »
OMG there are THREE newbies? I'm slacking! Actually I remember one other one-Greg who are the other 2?
Maureen :D :D
Logged
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

leapyrtwins

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Re: Alot to worry about
« Reply #36 on: April 24, 2009, 02:53:46 pm »
Quote from: bell on April 23, 2009, 09:37:21 am
I would be willing to drive down and meet you, I only live 1 1/2 hours away for MAyo.  

Bell - 

this is such a great offer; really warms my heart.

Good to see what others are willing to do to help a fellow forumite  ;D

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

grega

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Re: Alot to worry about
« Reply #37 on: April 26, 2009, 04:14:20 pm »
Well garsch, Maureen ... the other 2 are those just before moi ... Patty & Bell.  Just happened to notice  :o 

Greg
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1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

28Lisa

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  • pre opt
Re: Alot to worry about
« Reply #38 on: April 27, 2009, 08:36:28 am »
Its absolutely normal to be anxious.  I was too until I was admitted into the hospital, everyone made me feel relaxed.  Just take it one day at a time and try to keep a positive attitude.  Prayer also helps.  If you are hjome try to keep yourself busy either pgysically or mentally. 

Lisa :)
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A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

kabby

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Re: Alot to worry about
« Reply #39 on: April 27, 2009, 09:39:32 am »
No doubt about it--the waiting is AGONY...My appointment with the neurosurgeon is tomorrow.  Originally scheduled for 2:00, they called this a.m. to ask if I would wait until 3:30 or so because he will be backed up.  And they said, even at 3:30, expect a long wait!  Unbeknownst to those around me, I have been having major butterflies in my stomach about the whole thing and will be very happy to get this appt. over with!

As far as fluid in the ear, I have had that repeatedly and last year around this time, my primary doctor suggested tubes in my ear if it didn't clear up, which it did after a round of antibiotics.

For me, a nice quiet cup of tea at 3:00 is a great way to relax, let loose and then pull things together. 

Logged
Right side AN 2.8 x 1.8  SSD
Diagnosed 2003-Watch & wait until 3/09
Looks like it's gonna be translab

alwaysthere

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Re: Alot to worry about
« Reply #40 on: April 27, 2009, 11:30:45 am »
Kabby, I'm like you. After I finally see the Dr. I think I will feel lots better. I see mine next week. Man, it sure has been a long wait too.

Patty
Logged
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

Adrienne

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Re: Alot to worry about
« Reply #41 on: April 27, 2009, 01:47:14 pm »
Patty,

Right there with you on the emotional rollercoaster.  Thought I would feel better after meeting my neurosurgeon and consulting on everything.(it was a week ago today).  And I DID feel better.  For about 3 days.  Then, I had one super duper GREAT day, where I swore I was going to make it through this all positive and happy.  I felt calm and people around me actually commented that I was making THEM feel better about it. 

Well, I guess I was a little too smug because the last 3 days have been really down in the dumps and noticing things I never noticed before.  Two months ago when I heard the news 'AN', I swore up and down to my doctor that I only had one single symptom, and a very minor one at that (slight hearing loss).  Funny how in the last two months I now know that I have dizziness, balance issues, ringing in my ear occasionally, fullness in my ear occasionally, Trigeminal nerve shocking up the side of my face, and now- today's new one-blurry left eye.  Maybe it's because I've poked myself repeatedly in denial that it doesn't have the normal reflex to close (blurriness would seem like a normal response to being poked/proded too many times!), and yet my paranoia is taking over and I"m SURE it's because my AN is actively growing (along with my imagination.....).  I have a call in to my neurologist as we speak.

In short (or not so short?).  I'm RIGHT THERE WITH YOU.  Hope that makes you feel a *tiny* bit better.  We're on this road together, traveling a similar path.....

(hugs) while you go through the journey.  Hope I didn't make myself sound like too much of a mental case! LOL  I'm really pretty normal.  Really, I am......

Adrienne
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3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

mk

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Re: Alot to worry about
« Reply #42 on: April 27, 2009, 06:30:59 pm »
Hello Adrienne,

You are right that knowing about the diagnosis can make you more aware of your symptoms. More worrying means more stress, which in turn can increase the intensity of your symptoms.  It is a vicious circle.
I noticed that you mentioned that your eye is blurry. Are you currently using drops for dry eye? Since you are experiencing trigeminal issues, you most likely have reduced corneal sensation, meaning that your cornea is not able to keep the moisture in the eye at appropriate levels and doesn't produce enough tears. This can cause severe dry eye. I had this problem for several months (leading to severely irritated eye that I thought was due to my allergies). After I started using the eye drops the problem resolved.

Oh, and by the way, the size of my AN was also underestimated by the radiologist (he wrote 2.4 cm in his original report), whereas in reality it was more like 3 cm. Imagine my shock when I first did the measurements myself.
You are in good hands with Dr. Akagami, I have heard excellent things about him and his rates of success on the ANAC (Canadian ANA) forum. You might want to check with the people that have posted there about him. Everything will be OK.

Marianna

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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Keri

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Re: Alot to worry about
« Reply #43 on: April 27, 2009, 08:05:46 pm »
Hi Adrienne and Patty,
I was diagnosed in November. At first I felt fine, figured I'd just do the watch and wait. But then I was advised to have it surgically removed and I was comfortable with that deciision. I had felt absolutely fine, except for my hearing loss that led me to the discovery in the first place. After a month or so, I really started feeling more symptoms. I figured it was doubling in size. I would get on the forum and ask everyone if I was crazy... now I was feeling dizzy and wonky headed with lots of noises and ringing. Some of the wonkiness subsided before surgery or maybe I just got used to it. Anyway, I don't whether it's that we're just being more hyper aware of symptoms, but this seems to be natural.
You both have our support and prayers as you wait. Hang in there.
Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!
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