Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 115347 times)

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #45 on: July 13, 2008, 05:44:57 pm »
Steve, look!  I got my picture to upload. (Well, it's a little stretched out but it's me, small victory)
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.

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #46 on: July 13, 2008, 05:48:37 pm »
There you go! Now the hint about make the picture a square comes into play...:)

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.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #47 on: July 13, 2008, 07:07:13 pm »
HI Marci and welcome.  You sure "look" good! I'm glad to see that Steve was able to help you out (Hi Steve!btw... where's my hat? ;D) and welcome to the site.  I hope you find information and support here that you seek.

Wellness wishes to you,
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pauline

  • New Member
  • *
  • Posts: 24
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #48 on: August 03, 2008, 07:47:08 am »
Thanks!  I joined the ANA organization and contacted the local person in Phoenix!  I am newly diagnosed with AN and just being able to read all the info out there has been very comforting for me.  I am looking at cyberknife and have been reading all the comments from people who have had this procedure.  I also look forward to reading about those who have most recently had this done.  I thank all of you out there as you have all help me understand and cope with what is happening with me.  I have a more positive attitude in my journey as I have all of you "hold my hand" along the way!   

Pianist & Piano Teacher
Diagnosed 6/27/08
Watch and Wait

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #49 on: August 03, 2008, 08:36:21 am »
Pauline -

I believe Tumbleweed and DebbieL are two of that latest forumites to have CK.  You might find their posts - as well as the posts of others who had CK - very helpful.

Good luck,

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

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #50 on: August 24, 2008, 06:02:02 pm »
Donna-Lynn~
I just sent you a PM!!

K   ;D
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!

mikado

  • New Member
  • *
  • Posts: 14
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #51 on: September 03, 2008, 04:57:25 pm »
First appointment with Nsurgeon next Wed.

Initial symptoms X-mas morning Dec. 2007. No prevous warning, awoke with bed spinning and unable to stand...so much for our Turkey dinner! House-bound, unable to function normally, unable to drive.

MRI showed 1 cm. AN in May (hearing 100%).  As of August 2008, all symptoms have disappeared. No dizziness, vertigo, nothing. I feel great, normal again.

What does this mean?

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #52 on: September 03, 2008, 06:33:06 pm »
I'm assuming you're asking what your lack of symptoms means, but I'm not certain.

Lack of symptoms means absolutely nothing.  Some patients have huge ANs and small symptoms, some have small ANs and big symptoms - we're all different.  If your symptoms have disappeared, that's wonderful - but if your MRI showed an AN, it's still there.

At 1 cm you can watch & wait if you want to, but IMO you might want to look into treatment while you still have 100% hearing.  As your AN grows, you might find you have diminished hearing.

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

sunray

  • New Member
  • *
  • Posts: 3
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #53 on: September 03, 2008, 07:06:05 pm »
Hi, I did contact ANA so I do have a WTT list but I am a virgin to the forum so please bear with me.  I have NF2 and as a result, I had bi-lateral acoustic neuromas.  I've had 4 craniotomies spanning 10yrs.  My most recent was 4/16/08.  I had an acoustic neuroma that was a little over 5cm on my left side. I also had 2 cochlear implants which did not work. I'm not 100% yet but I am so ready to go back to work. I guess my reason for being here is because in my world, there is no one like me. I guess I am just looking for someone who understands. I'm pretty optimistic and fairly well 90% of the time.  Its that last 10% thats a stinker. :) Thanks and hopefully I'll get the hang of this.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #54 on: September 03, 2008, 07:43:45 pm »
Hi Sunray.

Welcome to our little world where there are plenty of others like you!  Not all of us have NF2, but I think all of us AN-er's can understand at least part of what you're going through.  And there are NF2-er's here who will definitely know!  So, no reason to feel alone - we're all in this together!

If you are optimistic 90% of the time after all you've been through, then I think you're doing quite well!  Don't let that 10% get you down.  Everyone has their bad days and I know lots of people with no medical problems who seem to have them more than 10% of the time!   ::)

And don't worry - you'll get the hang of this - it took me a little while too.  Hard to teach an old dog new tricks I guess!  If you go to the Home page, there should be a section for discussions specifically related to NF2, so you might find that helpful.

Feel free to send me a PM (Private message) if you like.  I'm sure you'll find many friends here!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #55 on: September 03, 2008, 10:02:35 pm »
Hi Sunray,

I hope you get the hang of it too. Don't worry about doing the "wrong" thing. We all make mistakes - in fact one of the moderators just made a doozy a few days ago. If you have questions about using the forum, just ask. There are also some helpful hints at http://anausa.org/forum/index.php?topic=2823.0.

There are some NF2'ers on the forum, although most are regular AN'ers. Jeff and Tony and Raven come to mind; they are around fairly regularly. Speaking of doozies, a 5 cm AN is a big one. I'm glad you are past that now.

You sound like you are in pretty good spirits, at least 90% of the time, and that is a great thing. I hope you find the forum useful, or at least a source of comfort. Welcome.

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.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #56 on: September 04, 2008, 04:05:20 am »
Hi, Sunray and welcome to the forum; we're thrilled to have you here  ;D

As Steve and Lori mentioned we have NF2ers here, as well as regular AN patients.  Steve mentioned a few NF2 members; there's also Cheryl R and Dealy (Ron).

It sounds like you've been through a lot and I commend you on an outstanding attitude. 

I'm sorry to hear that your cochlear implants didn't work.  There's a wonderful thread started by Jeff that talks about his ABI which might be of interest to you.  Here's the link http://anausa.org/forum/index.php?topic=6645.0

Don't be a stranger around here  :)

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

sunray

  • New Member
  • *
  • Posts: 3
Re: ANA WTT (Willing-to-Talk) List available to newbies (newbie here)
« Reply #57 on: September 04, 2008, 08:11:47 am »
Hi,

I posted!  Yay! Lol.  Lori. Steve, Jan :  THANKS Bunches for welcoming me. I truly appreciate it and look forward to forging friendships and finding my way around the forum.  Thanks for the invite Lori and I think I can be reached by PM also so hit me up 2. :) My next project will be trying to insert a picture. Lol. Oh Boy, that should be interesting. Yeah Steve, the 5cm was a definite major hiccup in my year. I"m walking again and driving so thank God. I still have left side facial nerve paralysis. I never LOOk happy or sad just indifferent which is hilarious to me but no one knows it bc I have facial nerve paralysis. LOL. My eyes do bother me more this time around which sucks bc I'm a book addict. Anyone have any pointers on how not to become a hermit?  In the past I've been very social but now I tend to shy away for fear of not being seen as normal. Is this feeling normal or am I nuts?  :-\

Cheryl R

  • Hero Member
  • *****
  • Posts: 1801
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #58 on: September 04, 2008, 08:19:03 am »
Sunray, I will get you written later today as am having to leave for a while.        I am also NF2 but the older adult onset version.         I have had 3 ANs and 4 surgeries since 2001 and have done really  well but been thru much more than I ever wish I have been.               My last surgery was on 4/17/08 so the day after yours.           I will PM you as I have written my story too many times and gets kind of boring to those who know it.                             More later,
                                               Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

sunray

  • New Member
  • *
  • Posts: 3
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #59 on: September 04, 2008, 10:17:04 am »
Hi Juliette, Welcome and I'm new 2. I was pregnant and actually a week from my due date when I was first diagnosed.  Fitting me in the MRI was a feat in itself.  Just don't be afraid to ask questions here and to the docs.  Make sure your surgical team has previous AN experience and speak with ur OB/GYN. How far along r u?   I had my surgery 3 mos after I gave birth via c-section but I was practically ready to pop when they found them ( I have NF2 so I had ANs and blah, blah, blah). I was also considered high-risk prego and I had a team of awesome OB/GYNs during my delivery.  My son was healthy and is now 10 yrs old and growing like a weed. Just know u r not alone.  We're all here and we so get how u r feeling.  :)

 


anything