Author Topic: Alot to worry about  (Read 7701 times)

Keri

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Re: Alot to worry about
« Reply #15 on: April 15, 2009, 10:18:26 pm »
Hi Patty,
Everyone's advice here is so good. I was diagnosed in Nov 08 and felt absolutely fine (scheduled surgery in Jan 09). I kept putting off thinking about the surgery (always seemed far in the future). Then in December, i started feeling more 'wonky headed'  and tipsy with ringing noises and all of that. I was convinced my tumor was doubling in size. That went on for a few weeks, then I started feeling a bit more normal again (or getting used to what I was feeling). I was relieved to have the surgery. I asked afterwards if it had grown and it had just a little (like 1 mm). I think there's times when the 'feelings' the AN causes seem more prounounced and we're more aware of them. I think the stress of it all makes it feel worse as well.

I went to an AN support group and it was good, but, since there were so many people and so little time to really delve into issues, I have found that I receive more support on the forum (OOOH NOOO... i'm not trying to knock the support groups and please anyone who's in the one i was in don't take it personally!!) There's just more time here to get so specific, get answers and opinions, and get ongoing support that can be daily. I do hope you get some support in person (whether it's through your church group, etc). I have felt very supported from my church and knowing they were always praying for me.

I think getting your will updated was smart, but not because I think surgery's going to be the end. When I flew somewhere with my husband a couple of years ago, we got our's updated, but not because we thought the plane was going to crash. It's just smart.

Thank you for sharing your feelings about it all. I do hope and pray you have peace. 4
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sgerrard

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Re: Alot to worry about
« Reply #16 on: April 15, 2009, 11:57:20 pm »
Everytime I get on, I see new people!  How do you guys keep everyone straight?

There are a lot, aren't there? There are a couple of things that help us all keep up. One is the AN Calendar (see link below), where you and others can post treatment dates and other milestones. The second is the weekly update, put together by David (LADavid) every Sunday. Here is the latest one: http://anausa.org/forum/index.php?topic=9255.0

It's fun and worthwhile at the same time. Most of us started out in the same place you are now, and found others here to help us through the maze. Some of us have now become part of the furniture. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

LADavid

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Re: Alot to worry about
« Reply #17 on: April 16, 2009, 12:51:42 am »
LOL, Steve.  I love the part of the furniture reference.  We definitely have a room full of comfortable furniture.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: Alot to worry about
« Reply #18 on: April 16, 2009, 05:54:31 am »
Hey, wait a minute!

Who are you guys calling furniture??  :D
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

joebloggs

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Re: Alot to worry about
« Reply #19 on: April 16, 2009, 07:35:47 am »
I'll let all the sideboards, chairs and tables above me keep chatting, but in the meantime Patty, I just wanted to say I hope you're doing ok with the wait and I totally understand - the last week before my surgery I was really anxious just to get it done.  I meant to do something about a will but I forgot - I certainly didn't need it and I don't have anything worthwhile to leave anyone so all good!!

As for your numbness and pains... I too had these before surgery.  The shooting pains I put down to the tumour irritating the trigeminal nerve.  After surgery the numbness was gone when I woke up and has remained gone and I had a few shooting pains in my ear the first couple of weeks afterwards which I guess was everything just settling down in there, but since then nothing.  All fixed!

You're going to be just fine...it's just the waiting which is a pain in the bum.  Maybe find a new hobby to take up some time and take your mind off things?  I started knitting and that worked a treat, and I've made some nice scarves and hats for friends!
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

leapyrtwins

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Re: Alot to worry about
« Reply #20 on: April 16, 2009, 11:00:35 am »
I did call Mayo to see about getting in sooner and couldn't. But, they did tell me to keep calling back to see.


Patty -

another option, while you're waiting with your appointment with Mayo, might be to consult with the docs at the University of Iowa who treat ANs.  They have a very good reputation and, even if you ultimately decide on Mayo, another opinion can't hurt.

Jan
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

MAlegant

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Re: Alot to worry about
« Reply #21 on: April 16, 2009, 06:40:54 pm »
Hi Patty,
Similar to others, I agree that the waiting and the anxiety of all of this is awful.  I needed an anti-anxiety medication so that I could at least eat.  That was the best thing I did for myself.  Also, when you do meet the doctors, if they are the ones you choose to do this procedure, you will begin to feel calmer.  You will be fine.  And we will all be here.  And there are quite a number of us in this particular orchestra.  (A better analogy than furniture, huh? :D)  Feel free to PM me at anytime.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Alot to worry about
« Reply #22 on: April 16, 2009, 10:20:49 pm »
And there are quite a number of us in this particular orchestra.  (A better analogy than furniture, huh? :D

Absolutely.  Being called a member of an orchestra, IMO, is much nicer than being called a piece of furniture  ;)
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

alwaysthere

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Re: Alot to worry about
« Reply #23 on: April 16, 2009, 11:50:36 pm »
You all are a riiot. It's so much fun reading all this. ;D
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"

leapyrtwins

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Re: Alot to worry about
« Reply #24 on: April 17, 2009, 06:27:23 am »
You all are a riiot. It's so much fun reading all this. ;D

Well, if nothing else, it gives you something to chuckle about while you wait for your appointment @ Mayo  ;)

Signed, The Couch  - or is that the Violin ?
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

MAlegant

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Re: Alot to worry about
« Reply #25 on: April 19, 2009, 02:34:05 pm »
Definitely violin.  First violin, and concertmaster, or rather,  concertmistress.  This means everyone in the orchestra has their eyes on you and watches your every move.  Theoretically.  Too much pressure???
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Alot to worry about
« Reply #26 on: April 19, 2009, 04:32:13 pm »
Geez.  That's a pretty big job  :o

Perhaps I should just stick with the first idea and be a couch  :D
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

MAlegant

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Re: Alot to worry about
« Reply #27 on: April 19, 2009, 04:44:30 pm »
You could be a viola player.  That's "couch" in musician-ese! :D
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kaybo

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Re: Alot to worry about
« Reply #28 on: April 19, 2009, 05:01:36 pm »
HEY!
I played the viola!!  ???

K
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!

MAlegant

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Re: Alot to worry about
« Reply #29 on: April 19, 2009, 05:48:42 pm »
No offense.  But you must be used to the viola jokes.  There are just as many soprano jokes.
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.