Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 115438 times)

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #60 on: September 04, 2008, 01:43:15 pm »
Sunray -

here's a link on how to post profile photos.  Hope it helps  :)

http://anausa.org/forum/index.php?topic=7238.0

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

LOIS

  • Jr. Member
  • **
  • Posts: 52
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #61 on: September 11, 2008, 09:24:43 pm »
Idar,

Read your post.  I also have asthma.  It was not a problem.  Just make sure to tell the dr., anesthesiologist and anyone else involved you need breathing treatments after surgery to get it all out of your lungs.  I was told a long while back when I had a bad experience after emergency surgery to do that.  This surgery went fine with the asthma.  My dr. and everyone else was right on top of it cause I let them know.  Its been 2 weeks since the surgery and asthma has not been a problem at all.  Hope that helps somewhat in your desicion making.

Lois
Diagnosed 07/08   1.2 x 1.1 cm. left AN Retosigmoid surgery 08/08 with Dr. Bartels  @ Tampa General Hospital

vjgfamily

  • New Member
  • *
  • Posts: 48
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #62 on: October 23, 2008, 09:50:35 pm »
Hi. I had acoustic neuroma surgery 20 years ago. At that time (1988), the surgical procedures were in their infancy, but I found the best doctors possible (Los Angeles). The doctors in Oklahoma (Tulsa) had only done a handful of these surgeries, so I found a couple of more experienced ones in LA. I was young, and my recovery only took about 6 months...although I still live with repurcussions. But, I'm living well........and you can too. Let's talk.

Also, from my personal experiences, I can discuss the following:

Symptoms
Surgery
Recovery

Also, what is BAHA?
AN Surgery in 1988 by Jack L. Pulec in LA.  Loss of hearing in right ear.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Newbie with 3.8 cm AN
« Reply #63 on: October 24, 2008, 07:15:23 pm »
A BAHA is a bone-attached hearing aid.  Basically a titanium rod implanted in the skull that a tiny hearing aid (processor) attaches to.  It's for those who are SSD (single-sided deaf).

Here's a link that explains the scientific stuff behind it http://www.umm.edu/otolaryngology/baha.htm

Here's a link to pictures of mine http://anausa.org/forum/index.php?topic=6634.0

It's very cool technology  8)  I highly recommend it.

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #64 on: November 09, 2008, 12:37:50 pm »
I have moved a recent set of posts to its own topic:

Alicia (Alicia678): New with 3.8 cm AN, http://anausa.org/forum/index.php?topic=7978.0

Steve
« Last Edit: November 09, 2008, 08:41:23 pm by sgerrard »
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.

bern

  • New Member
  • *
  • Posts: 36
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #65 on: December 19, 2008, 06:16:47 pm »
I hope you can help me.  I had gamma knife rad. in July.  My an was about the size of an m and m.  Since treatment, i have developed a chronic, severe ear pain that nothing seems to help.  My doctors are of no help.  I go for another MrI in January.

What do you know about this ear pain that I have?  What shall I do?  I have called my neurosurgeon again today and still no call back. I really need pain relief.

any advice would be appreciated

Bernadette

Hexe

  • New Member
  • *
  • Posts: 6
  • New to this
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #66 on: February 26, 2009, 10:36:45 am »
Hi, I am about 4 weeks post-op had a translab and am deaf on that side and wear a hearing aid in my "good"ear.
I am still experiencing dizziness, poor sense of balance, double vision, and am missing some common words.
Is all of this normal or should I call my doctor?
Any idea how long this will last?
Does amyone have experience/knowledge about bi-cros aides; like cost and merits of different brands?
I am also not very computer savy so I hope I will post this and receive replys.
Thanks,
Hexe
Hexe
Trans-lab 4 weeks ago. Ann Arbor MI, Dr Steven Telion. SSD, continued tiredness, problems with balance, dizziness, memory, double vision. Consider myself lucky my symptoms are few and not too disabling.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #67 on: February 26, 2009, 10:49:44 am »
Hi, Hexe -

the symptoms you are experiencing (dizziness, poor balance, and double vision) are very common post op and generally go away in time.  Everyone's AN journey is different so it's really hard to say how long your symptoms will last.

As for the bi-cross aid, I did a search and here is a topic you might find helpful  http://anausa.org/forum/index.php?topic=7877.0

If you put bi-cros in the search box at the top left-hand side of your screen you'll find other posts related to the bi-cros aid.

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #68 on: March 05, 2009, 01:37:53 am »
Pamk: I moved your post to a new topic, so more people would see it.

http://anausa.org/forum/index.php?topic=8885.0
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.

lauralynn

  • Full Member
  • ***
  • Posts: 138
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #69 on: March 12, 2009, 09:02:26 pm »
Hey Pearl,

My surgeon actually gave me a pamphlet for the ANA and I sent for the package.  I have emailed 3 people so far and they all have been so sweet and said I can call them anytime.  I actually plan on it this weekend.  I'm so glad that I found this forum!  I know it's going to help me before my surgery and after.  Pearl on my last post I think I mentioned that the doctor said I'd have to do one session of Gamma Knife.  I haven't been able to follow up w/ him and ask about that but as soon as I do I will let you know what he says.  I know when I did ask at my appt. I was surprised when he said I would only need to have one treatment of the Gamma.  Only having to do one treatment would be nice though!
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #70 on: March 12, 2009, 10:15:19 pm »
I think I mentioned that the doctor said I'd have to do one session of Gamma Knife... I know when I did ask at my appt. I was surprised when he said I would only need to have one treatment of the Gamma.

Gamma Knife is usually done in a single treatment. It is CyberKnife, and sometimes other machines, that do 3-5 treatments.

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.

Vivian B.

  • Hero Member
  • *****
  • Posts: 583
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #71 on: March 13, 2009, 08:12:53 am »
Hi Joan,

I noticed you said you have to go to Sunnybrook Hospital. I am assuming you are from Ontario. Who is your surgeon/Neuro. I am also being treated there.

I have a meningioma in the 7th cranial nerve about 8mm. I saw Dr. Nedzelski, he is great and now waiting for consult with Dr. Schwartz.

Love to hear from you.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

mk

  • Hero Member
  • *****
  • Posts: 968
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #72 on: March 13, 2009, 12:15:58 pm »
Vivian hi again  ;)

I noticed you will be seeing Dr. Schwartz. He is great, I consulted with him too (about GK). He does both surgery and GK, and has published on the procedure. So he will be able to give you a good perspective on both. I am sure you will have a very constructive consult.

Marianna
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.

LisaP

  • Sr. Member
  • ****
  • Posts: 414
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #73 on: March 16, 2009, 05:28:23 pm »
Pearlly,

You are the best, you know that, there for everyone.  Oh by the way my one year anniversary of my dx is March 31st and one year of not smoking on April 4th sooooo my good friend Kim is treating me to yes Pearl OPENING DAY OF THE RED SOX, on April 6th. 

I will be thinking of you and see you soon at our Luncheon!!!

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Patsy1960

  • New Member
  • *
  • Posts: 12
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #74 on: April 03, 2009, 07:23:12 am »
Hi,
I am a newbie not yet sure i have AN but after last night pretty convinced I do. May i ask what your symptoms were and how soon after they started when you got a diagnoses.  I only have tinnitus in my left ear for two weeks now. My Doctor cleaned out a huge plug of impacted wax in that ear that seemed to help but tinnitus came back next day and hasnt stopped since.  So now i am worried.  I didnt like the ENT he sent me to so wonder how long i can wait before seeing another. I have slightly elevated BP i am on low dose meds for so nto sure if that is contributing to it.  I just really scared. Last night we went to an activity at my childs school and the acoustics in the gym with all the noise made the tinitus worse.

 


anything