Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 130170 times)

GRACE1

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #75 on: April 14, 2009, 07:27:38 am »
Don't freak out.  A lot of people have tinnitus that don't have an AN - my husband, for one.

I would think you need to get your hearing tested first.  That is how I found out about my AN.

Keep us posted.

Good luck with your hearing test.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

helene1948

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #76 on: April 14, 2009, 06:07:15 pm »
Has anyone on this site had proton beam radiation for their AN......has anyone had recurring headaches and what did they do about the headaches?


Helene in Ohio

Alice Rapunzel

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #77 on: April 15, 2009, 01:16:13 pm »
I just found this website and forum today. I am 18 months post surgery from a 16 hour (planned 8 hour) facial nerve neurofibroma. I have both literally and figuratively stumbled through my recovery due to a lack of information. No one has ever mentioned to me that in a horseshoes and handgrenades sort of way that an acoustic nerve tumor is similar. While the surgeons were excellent the impression I had, and seemed reinforced in my dealings with them post surgery, was that I'd be up and around good as new in a few days -- a week at most.

The emotion I'm feeling just now to have found others of my kind, so to speak, it overwhelmed.

I'd love the opportunity to talk directly with someone.
Claudia - aka Alice Rapunzel for "wonky head" & spatial "Alice Through the Looking Glass" cognitive issues + preference for cool, dark and quiet rooms (variation on Rapunzel's Tower)
Facial Paralysis since age 2 
Facial Nerve Neurofibroma resection -brainstem/IAC/middle ear  w/auricular graft 2007

Cheryl R

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #78 on: April 15, 2009, 03:03:13 pm »
Hello and very good you found this site but too bad wasn't earlier.       With your surgery ,was your facial nerve severed or just badly damaged?        There are some types of surgery to help your paralysis if the nerve was severed.         I had a facial neuroma and surgery 3 yrs ago but we knew ahead it probably was so my surgeon took some nerve from by my ear and grafted in at the time of surgery as my nerve was severed and improved me but am not perfect by any means.                        My recovery was pretty much like normal AN surgery.                            I have had tumors on both sides so am NF2 and have had 2 regular ANs removed also.              The facial type isn't real common but does happen.                     I go to Univ of Iowa for treatment.           
   Feel free to talk here and ask any questions you can think of.         I wish you well!
                                                         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

Alice Rapunzel

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #79 on: April 15, 2009, 06:37:30 pm »
I'm still feeling pretty emotional. Relief, I guess. But wanted to thank you for your quick response, and after all you've been through yourself.

I'd like to believe I would have done better if I had had any clue that there would be things related to the surgery (dizziness, imbalance, loss of blink reflex, severe dry eye, etc), and especially that there was even the potential for these things to be lasting this long. A direct result of the length of the surgery was nerve damage at my elbow and neck (double crush) which has resolved to livable levels.

I consider myself a fairly bright person, but didn't connect the dots between eyelid closure (which gold weight and lower lid surgeries resloved nicely) and lack of blink reflex and chronic dry eye stuff. I feel pretty stupid that it took until last winter for me to research and find ways to manage it better than simply putting in drops. I had really great surgeons, including oculoplastics, but I not surprisingly (I understand now) they were strictly and narrowly focused on the surgical procedure only.

Background on my tumor. I'd had a crooked smile since I was about 3 years old. Through the decades, my pirate smile as a long ago boyfriend put it, had been oft and repeatedly remarked upon by physicians as either a return episode of Bell's Palsy or residual from it.

Prior to surgery, a CT showed a mass in the middle ear, confirmed with MRI to be a facial nerve tumor, most likely a schwannoma. The facial nerve had to be resected at both ends -- brain stem and parotid gland. Even though I already had a House-Brackmen score of 5, there was still some muscle response on the EMG so a nerve graft was done using the greater auricular nerve.

I am so surprised how hard this is for me to write about! I'm usually quite chatty and have no problem talking objectively about this. I'll come back in another post and fill in.


Claudia - aka Alice Rapunzel for "wonky head" & spatial "Alice Through the Looking Glass" cognitive issues + preference for cool, dark and quiet rooms (variation on Rapunzel's Tower)
Facial Paralysis since age 2 
Facial Nerve Neurofibroma resection -brainstem/IAC/middle ear  w/auricular graft 2007

Kaybo

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #80 on: April 15, 2009, 07:18:30 pm »
I sent you a PM if you want to chat...

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!

mlouise073

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #81 on: May 08, 2009, 07:36:22 am »
Thanks!  I am going to call for that list...MRI today or tomorrow to confirm Drs. suspicians of regrowth...here I go again after one sugery already...I just want to cry! Mary
8mm by 13mm located in left cerebellopontine angle extending into internal auditory canal growing toward brainstem. Surgery in March 07 with Dr. David M. Kaylie at Baptist Hospital in Nashville

ppearl214

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #82 on: May 08, 2009, 09:43:07 am »
Hi Mary and welcome.  Please hang in there and keep up posted, ok?


I know the ANA has updated the WTT list which now outlines those that volunteer time/good ears/energy and the type of treatments (or if still in W&W).  For those researching treatment options, the list contains many different treatment options so you can speak to those that had treatment done that may be of interest to you.

Hope this helps.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #83 on: May 08, 2009, 11:51:48 am »
Mary -

Like Phyl said, the ANA just updated their WTT list recently.

I thought it was a great idea that they asked those of us on it whether we had surgery or radiation, had a TransEar or BAHA, were watch & wait, etc.  The list also tells you how long ago someone had treatment, which IMO is very helpful. 

The list contains physical as well as email addresses plus phone numbers, so you can reach those on it in whatever manner is most comfortable for you.

The ANA will also send you their brochures that tell all about ANs and your treatment options - all you have to do is ask them.  I found the brochures extremely helpful and written in very basic language that was easy to understand; not medical-speak.

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

Tami

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #84 on: December 04, 2009, 12:24:46 pm »
I am new, I have a 2cm AN, I lve in Kansas, does anyone know of Dr. Thomas Kryzer?

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #85 on: December 04, 2009, 02:55:18 pm »
Tami -

I searched on Dr. Kryzer and found this old thread by addictedtohorses

http://anausa.org/forum/index.php?topic=2439.0

It looks like she had her surgery with Dr. Kryzer and although she hasn't posted recently, if you PM her she might respond and give you her experience.

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

Schadee

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #86 on: December 26, 2009, 06:04:35 am »
This is my first post--here goes: Diagnosed with left AN 1.3cm in Oct. Just had RS surgery 2 weeks ago. I now appear to be deaf in the left ear but still have plenty of tinnitus. I'm a little wobbly and dizzy still too. I was so grateful after the surgery and nausea was over that nothing seemed to matter...maybe now it does. At night I feel trapped inside my head, especially if I lay on the right side. It's hard to sleep. I usually get up at 3:30am. Does it get better?

Kaybo

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #87 on: December 26, 2009, 10:24:56 am »
Diane~
I am not officially on the WTT list but I would be happy to talk with you anytime - send me a PM (on left) with your number & a good time to call if you'd like...

;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!

LisaP

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #88 on: January 31, 2010, 11:42:56 am »
Hi All,

I have just been added to the Willing to Talk List and I am also trying to organize a support group for the Greater part of Western Mass

thanks

LisaP
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

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #89 on: February 01, 2010, 06:54:31 am »
Great news, LisaP.

I'm on the WTT list too!

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

 


anything