Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 97526 times)

Boppie

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #15 on: August 11, 2007, 12:30:03 am »
I'd like to compliment the ANA on the idea of the WTT List.  I'd also like to send my respects to the brave patients who venture forth to call the list.  I have found callers and inquiries to be based on well formed lists of questions and concise requests. 

I do feel it important to not give a rundown of our own story.  I feel it is necessary to answer the questions of the caller and not allow histrionics to cause stress.

I am sorry to read that a patient would be be put in a more stressful situation by a phone call that was designed to help.


Don Winslow

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #16 on: August 20, 2007, 02:46:49 pm »
    Hello all.  I am an oldie (age 77) who has not corresponded in several years but I have a question.  I had radio surgery on my 9 mm AN several years ago and learned to live with minor dizzines.  But during the past moinths, I have experienced what I call "a head full of wet sawdust" whose symptoms are dullness, difficulty in reasoning, depression, need to sleep, etc.  No pain.   
     The symptoms are similar to those of Meniere's disease but that was ruled out by my doctors at Mayo-Jacksonville. They told me several years ago that they couldn't help me with the symptoms.  Do others have these symptoms?  If so, how do they deal with them? 

      Thanks, Don Winslow

Boppie

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #17 on: August 20, 2007, 03:42:06 pm »
Hi Don,  I am 65.  Welcome to this forum and make yourself at home here.  There are threads here for symptoms, and Meuniers references; you'll find great information plus a few old patients like me!  :)  Use the search tool and plug in your keywords.

Have you had a recent MRI to look at the necrosis of your former AN?  I mean, since you were treated for a small tumor, you'd like to see if the scar tissue is the same.  You might need to fein pain in the head to get the MRI but heck the test is security to know what you are dealing with for sure.  As for the "symptoms" I'd want to get the diagnosis of the symptoms nailed down and to have a look at my own MRI.  There are medications for all sorts of symptoms.  What do they mean?...can't help you?
« Last Edit: August 20, 2007, 03:49:55 pm by Boppie »

ixta

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #18 on: August 20, 2007, 11:24:27 pm »
I am free to contact if anyone is investigating SkullBase Institute. Feel free to mail me here for contact info, I dont want to put my contact info in theforums. see my SBI topic under Microsurgery options before contacting..most questions are answered there.
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
thestatus.com   h   biologyfly06

irene

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #19 on: August 23, 2007, 08:22:35 pm »
Hi I'm a new member, 6mm Lt AN compressing my cochlear apparatus causing dizzinss, decreased hearing and horrendous tinnitus so my oto neurosurg here  is sayi ing time to operate. But he can only go retrosigmoid which will make my chronic severe migraines worse. Is it logistically easy to travel cross country and have the surgery done at House topreserve my hearing?  I need my hearing for my job so i want to maximize my chances of saving it and Dr. Brackman seems to have the best results.  Any thoughts?

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #20 on: August 23, 2007, 09:15:00 pm »
Irene -

I don't think any doctor can guarantee preservation of hearing.  You definitely want someone who will do his/her best, but if someone guarantees you something 100%, I'd be leery.  I could be way off base here, but I think any experienced doctor who performs retrosigmoid tries to maximize preservation of hearing, otherwise he/she would do translab.

From what I understand House has a wonderful reputation, but there are also other very qualified, reputable doctors who perform AN surgery.  I had mine done in Illinois and could have not possibly traveled cross country, nor do I feel I needed to.  I found incredible doctors right here in my own backyard.  I think the main thing with surgery is experience.

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

Mark

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #21 on: August 23, 2007, 11:45:24 pm »
Irene,

Is there a reason you are not considering radiosurgery for an AN that small?

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

firewalker

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #22 on: November 16, 2007, 12:22:56 pm »
I'm so appreciative of ANA's WTT list. I'm a newbie as well and because of this list, was able to contact a LIVE person that helped me get started on my AN quest for the right surgeon. Jan Leapyrtwins was my first contact on this list, and I choose her because she lives the closest to me. She was able to direct me to support groups in my area that weren't on the list and gave me the heads up on this forum. Thank you Jan!!!

I've never particiated in a forum and have found this source to be incredibly helpful at this difficult time. I'm so grateful for the WTT list and for all of you!

~Firewalker
2.8cm right ear AN diagnosed on 10/10/07. Translab surgery on 1/30/08 with Dr. Brackmann & Dr. Schwartz at House Clinic, CA. Two tiny tumor scrapes were left to preserve facial nerve. SSD, Lagopthlamos with temporary facial nerve paralysis and some Trigeminal Neuralgia. Am improving every day.

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #23 on: November 19, 2007, 09:26:45 am »
Firewalker -

You're welcome.  I'm so glad I could help you.  After my surgery I became a member of the ANA and received the WTT list.  I found some wonderful people who told me about their experiences and gave me some great tips on the BAHA. 

Helping each other is what this forum is all about,

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

Dee

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #24 on: December 23, 2007, 12:22:28 am »
Hi, I wish I had the courage to talk to this forum before my surgery in the Spring.   :-\ I was scared & didn't know what to expect.  My sister gave me so much research on A.N. & I was overwhelmed.  The surgery to remove a 2cm. Tumor was successful but of course I have no hearing in my right ear & had facial paralysis which is now slight.
I definitely did not expect to have to go through physical therapy for walking.    I check your forum once in  a while when I have a concern & hope to be able to contribute when I can.
    

summer

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #25 on: January 01, 2008, 12:28:41 pm »
  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

Trish Butler

ppearl214

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #26 on: January 02, 2008, 08:48:14 am »
Trish,

thrilled to see you listed as well....

Folks, Trish is a terrific lady with lots of love and great advise to share...... I'd take her up on it! :)

Phyl



  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

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

Denisex2boys

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #27 on: January 22, 2008, 03:44:02 pm »
Hi there ..... I am just wondering if there is anyone on the 'willing to talk' list that uses MSN messenger?  Either via webcam 'text messenging' or computer calling ....... if anyone wants to contact me on MSN - - search for denise_dougall@hotmail.com ....... I would look forward to a 'chat' with one or a 'group chat' .........  I will be needing lot's of encouragement these next couple of months - and could also probably offer some :)
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

Kaybo

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #28 on: February 12, 2008, 04:25:04 pm »
I called today to find out more info about the WTT list.  Obviously there is no support group here, so I hope I can be a helpful resource in this area!!  Can't wait to get the papers!
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!

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #29 on: February 12, 2008, 05:14:06 pm »
K -

that's great news.  I've been on the WTT list for a while now and I find it's a great way to help others.  Being a resource is very fulfilling.   ;D

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

 


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