Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 117905 times)

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #105 on: October 26, 2010, 04:34:45 pm »
As I mentioned in my previous post, the WTT list doesn't give the name of the doctor(s) who treated each person on the list.

If you want to find others on the Forum who had surgery with Dr. Tamargo, search on "Tamargo" - using the search box in the upper lefthand corner of your screen under "User Info".

There should be several posts by patients of Dr. Tamargo's.

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

Chris P

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #106 on: February 22, 2011, 10:40:56 am »
Phyl,

   I want to say you are right about the WTT list.  I also got a packet and it had so much information .  It helped me a lot.  I joined the association recently and enjoy the support.  I do find it is hard to connect with someone with my experience.  I had  Gamma Knife Radiation in June 2010 on a small tumor in my right ear, and four months later got facial weakness.  I am still dealing with that along with loss of hearing and loud sounds in my right ear.  The facial weakness has improved in small amounts but is still not good.  I do not drive because my right eye does not close all the way and it tears and distorts my vision.  My balance is not all that good either but some days it is better than others. 
   I just try and keep a positive attitude and take it one day at a time.  My doctor tells me it is a slow process and he wants to see me in June for a follow up MRI.  I had my GK at Shands in Gainsville Florida.  It all went well and as far as the doctor can tell the tumor is dying in the center , he feels all is going along as it should. 
   I hope you continue to have good reports .  Thank you for your information.

Chris P
Small AN 14mm , right side , Gamma Knife Radiation 6/22/10 Gainsville, Florida.
Balance issues, hearing loss and facial weakness appeared four months post op.

Pruneface

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  • 3.5 cm tumor; Surgery planned for June 13
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #107 on: March 28, 2011, 06:13:55 pm »
Is a two-or-three-month wait time between diagnosis and surgery acceptable?  I'm a teacher and would liike to wait until June to have my surgery for a 3.5 cm tumor.  Doc says that's okay.  How long have you waited, folks?

Kaybo

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #108 on: March 28, 2011, 07:00:51 pm »
Hi Pruneface and welcome!
I was a teacher too & I grew up with teachers for parents so I totally understand about wanting to wait until summer!!  3.5 seems a bit on the large size but if your doctor says it is OK to wait, then I guess it is OK.  Will you tell us a bit more about you?  What area are you located in?

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!

mandy721

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #109 on: April 02, 2011, 12:24:58 pm »
Pruneface,

My husband's tumor was a bit smaller than yours and he had surgery 2 months after diagnosis.  His doctors told him that it needed to come out within a few months, but that it wasn't an emergency.  I agrees with Kaybo, if your doctors think it is ok, go with their recommendation.

Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #110 on: April 02, 2011, 01:11:30 pm »
Prune -

ANs are typically very slow growing so you shouldn't have any problem waiting 2-3 months for treatment.  Some patients watch & wait for years, in fact.  If your doctor was concerned with you waiting, I'm sure he would have told you.

I had my surgery 6 weeks after diagnosis.  I was diagnosed in mid-April and had the surgery at the end of May.  I purposely scheduled the surgery that quickly because I wanted to be on a plane in early August and my doc has rules about how long you need to wait before you can fly (not all docs have the same rules).

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

Twindad

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #111 on: June 19, 2011, 08:03:44 am »
Thanks for the info. I must make that call in the morning. Getting so stressed out with this upcoming surgery ! Just want it over with to rid myself of these severe headaches. Who knows, maybe I'll meet a grumpy nurse or two in the process.  :P
Translab Surgical approach
3.5cm x 3.8cm x 4cm. Loss of hearing on left. Removed 6-23-11 / 10.5 hrs

ckoza1

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #112 on: July 20, 2011, 03:00:01 pm »
Thank you so much, Phyl, for posting this and being there for us. I am newly diagnosed as of July 7 and am pretty scared of it all. This is giving me something to hang onto, and I am most grateful for all of the support and information I have recieved in a very short time. I have joined the ANA and am looking forward to recieving their information package.

Chances3

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #113 on: October 06, 2011, 11:00:51 am »
This site was a lifeline to me when I was in the valley.  No one but AN people know what you are feeling.  Excellent advice was given to me when I asked and replies of encouragement when I needed to vent.  I am in contact with my local chapter, and I hope to make a meeting next month.  Everyone is wonderful here, I feel like we have been friends for a life time.

God Bless you all.

P.S. - and the spell check works real well, ha-ha.....

Mei Mei

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #114 on: November 09, 2011, 09:36:42 pm »
Dear PPearl and  Nancy
I am new to the Willing to Talk list but your comments bring up some concerns that I have been thinking about.   I think that definitely there should be more screening and "TRAINING" involved in the WTT list so that what happened to Nance doesn't happen again.  We are all different patients not cut from a mold.   The privildge of being on the WTT list does not put you in a place to vent your own problems.   We have to listen with open ears.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

ppearl214

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #115 on: November 10, 2011, 05:26:39 am »
Hi MeiMei and agreed.  The goal of the WTT list to offer volunteer patients who are willing to open up good ears in an unbiased way and to share our own personal experience.  Many do not log onto the forums so it is a way for us to be there for those that may be newly diagnosed or going through the processes..... to share what we have learned via our own AN journey but the key, as noted to us on the WTT list by the ANA, in an unbiased way.  The ANA clearly notes this when we join the WTT list and I have not run into any discussions with those that phone me (I receive, on avg, approx 3-5 phone calls per month that last approx 30-60 mins) that have noted biases or "venting" when they have spoken to others on the WTT list prior to phoning me.

I, personally, have never "vented" during a WTT phone call as that is not the arena to "vent" any frustrations I may have in my AN journey.  My/our role on the WTT is to be there for someone else as you noted.

Not sure if that helps... it's early right now.  Thank you for being on the WTT List... and all you do here! :)
Phyl

Dear PPearl and  Nancy
I am new to the Willing to Talk list but your comments bring up some concerns that I have been thinking about.   I think that definitely there should be more screening and "TRAINING" involved in the WTT list so that what happened to Nance doesn't happen again.  We are all different patients not cut from a mold.   The privildge of being on the WTT list does not put you in a place to vent your own problems.   We have to listen with open ears.

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

wendymenard

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #116 on: June 16, 2012, 01:46:24 pm »
I will be on that list soon too if not already...I think talking with each other is a great form of therapy. We all need to lean on each other  :)
Retrosigmoid approach Oct 25. 2011  2.5 cm tumor on hearing nerve touching facial nerve and brain stem. Experiencing several post op issues but staying positive and creating my new normal

robinb

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #117 on: January 24, 2013, 08:05:04 pm »
I would be happy to be on the WTT list as I had GK this morning and feel great.

Would whoever maintains this please contact me.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #118 on: January 28, 2013, 02:22:26 pm »
Robin -

you should contact the ANA directly.  Their staff doesn't regularly access the Forum - and when they do it's doubtful they read all the posts; just too many.

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

robinb

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #119 on: January 28, 2013, 02:36:36 pm »
OK, will do. Thanks!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

 


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