Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 95951 times)

rebecca1

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #30 on: February 25, 2008, 09:38:37 am »
Hi - So glad to hear you are doing well.  My husband was just diagnosed with 1cm AN left side.  All the options!!!!  We are considering Cyberknife.  Do you know where we can get good unbiased info on the difference between Cyber and Gamma?  I am really unclear about what the differences are.  I know amount of treatments is different, the head device, but is it the same type of radiation?  Same amount of radiation? 

Thanks for any info- 

ppearl214

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #31 on: February 25, 2008, 02:59:24 pm »
hi rebecca to you and your husband. I am glad you all found us as this site is filled with a wealth of info and experiences and thoughts, etc, about our individual AN journeys.  If you have time, take a look at the "Radiation/Radiosurgery" discussion forum. There is a lot of info there and many of us (myself included) that have had radiosurgery on our AN's....

Please give your husband my best regards and please remember to take time for yourself, as well.

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

rebecca1

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #32 on: February 25, 2008, 03:18:44 pm »
Also, does anyone know a good cyberknife surgeon?  We live on the east coast of S Florida.  There is a cyberknife facility near us, but I cannot find a surgeon trained in cyberknife who has experience with AN.  We would be willing to travel anywhere to get a really experienced doctor.

Any help or advice would be GREATLY appreciated. 

ppearl214

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #33 on: February 25, 2008, 05:17:41 pm »
Hi rebecca,

there are many CK locations in S. FL... you can go to the website (http://www.accuray.com/CyberKnifeLocations.aspx?id=574&LangType=1033) and do a search by FL or zip code to help find a center near you.  As you may know, radio-surgery isn't "surgery" as you would think cutting with a scalpel (did I spell that right?).  A neurosurgeon, neuro-oncologist and radio-oncologist are typically the lead physicians when opting for CK (and many other forms of radio-surgery). There are also many others behind the scenes but these are the folks to generally meet with in discussions of CK or other radio-treatments.

I 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"

MaryBKAriz

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #34 on: March 25, 2008, 09:10:34 am »
 :) Hello from a Newbie in Arizona. I just got the news yesterday from my ENT that my MRI showed the AN in my right ear. I am lost right now and I see a specialist tomorrow and don't want to be an idiot. I have read a lot in the last 12 hours but I don't have the insight of someone who has "been there". I am having a fair amount of hearing distortion, ear pressure, imbalance, dizziness and occasion . No facial symptoms, though, I am thankful to say. I appreciate finding this sight. I live in Chandler and will be seeing a physician in Phoenix who is connected with the Barrow Neurological Institute. I have never heard of this condition before. Since I kknew I had a problem I am basically relieved it isn't malignant, but not happy with some of the decisiions, outcomes, procedures ahead. Thank you for listening.  Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #35 on: March 25, 2008, 12:19:11 pm »
Hi, Mary, and welcome -

I'm glad you found us too  ;D 

There is a lot of information on this forum, but I also suggest that you contact the ANA and ask them for some informational brochures.  Being diagnosed with an AN is not only shocking, but stressful and confusing - since the average person doesn't know what they are.  IMO the brochures are very helpful in explaining ANs and treatment options, and in addition, they are written in basic language that is easy to understand.  The ANA can also give you a list of patients WTT (willing to talk) about their experiences by phone and/or email which may be helpful to you - there are most likely some patients in your area.

Good luck with the specialist tomorrow; let us know how your appointment turns out.

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

lori67

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #36 on: March 25, 2008, 03:04:34 pm »
Hi Mary.  Welcome to the club. 

I'm sure all of the information you've found can be overwhelming.  And don't worry - you won't look like an idiot - I didn't even have a chance to research AN's prior to my meeting with the doctor so I'm sure I asked more ridiculous questions than those that are informed beforehand.  Besides, no question is silly or idiotic when it comes to your head!!

Hopefully after your appointment you won't feel as lost and you can always count on some good, honest input from this site!

Good luck at your appointment!
Lori
p.s.  I'll be in Arizona next month to visit the in-laws - closer to Tucson though.  It's so pretty out there.
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.

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #37 on: May 03, 2008, 11:10:21 am »
Thanks, Richard.

Glad you found this website and this forum.  It's been invaluable to me - and I'm so happy it is for others, too  :)

Mind if I ask - are you a patient or family member?  Having treatment, thinking of having treatment, done with treatment?

If there are any specific things we can tell you about, please just ask.

Jan
« Last Edit: May 03, 2008, 11:12:00 am by leapyrtwins »
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

zeek

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #38 on: May 16, 2008, 08:38:20 pm »
I see where IDAR wanted to know about her astma. I also have astma and was out for 24 hours before I woke up. And my astma was accutally better while I was in I.C.U. than at home. They did an exellent job. I wouldn't sweat it.

sher

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #39 on: May 22, 2008, 02:25:29 pm »
Thank you,
I called and they are going to send me the packet. I do so need the WTT list.
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

leapyrtwins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #40 on: May 22, 2008, 10:55:38 pm »
Thank you,
I called and they are going to send me the packet. I do so need the WTT list.
Sher

Sher -

IMO you'll find the WTT list is a wonderful resource.  I'm on the list myself and I find that the people who call me are so glad they are able to make a connection with someone else who can relate to what they are going through. 

I live in Illinois and my phone number and email address are on the list.  Feel free to call or email me if you'd like.

Jan (Benjamin)
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

MAlegant

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #41 on: July 12, 2008, 10:44:39 am »
Can anyone tell me how to download a picture (for my profile) from a mac?  I figure I ought to put my pre-surgery smile out there while I still can.  :D
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

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #42 on: July 12, 2008, 11:07:49 am »
The picture needs to be on a public web server somewhere, such as http://photobucket.com/. Once you have done that, you put a link to the photo in the space provided in your profile setup. One hint: making your photo a square will prevent it being distorted when it shows up in your posts.

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.

MAlegant

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #43 on: July 13, 2008, 07:55:46 am »
Hi Steve,
Frappr should work as well, yes?  Still can't get it to work, alas.  Is there another site, other than photobucket?  Photobucket wants to charge a fee through my cell phone, but my boss pays for that and I don't think I want to do that.  Thanks for putting up with the trivial questions.  It seems as if the small things are so much easier to deal with (and control) at the moment.
Thanks,
Marci
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

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #44 on: July 13, 2008, 05:04:59 pm »
Any web site will do. Photobucket offers to do something with your cell phone, but you can leave it blank and skip all that. I just registered myself for fun.

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.