Author Topic: Do you attend local support group meetings?  (Read 3731 times)

Nicole222

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Do you attend local support group meetings?
« on: July 03, 2008, 06:34:09 am »
I had my surgery on May 9th and the Dr's office called me yesterday to encourage me to attend the local AN support group meeting.  I think it is only quarterly, but I think I'll go to see what it's like or if I could be of help/support to someone :)

Have you attended any AN related support groups in your area?  How were they?
Had surgery (retrosigmoid) May 9th, 2008 to remove a 3.5cm AN from left side.
Home one week later, no facial nerve damage. 
SSD -Left ear.
Thankful daily for fantastic surgeons and wonderful family and friends.
34 years old.  Married mommy to Jordan, 23 months.

sabuck

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Re: Do you attend local support group meetings?
« Reply #1 on: July 03, 2008, 07:09:50 am »
I don't know of any "in person" groups in my neck of the woods (Columbus, OH). I suppose that I would be willing to go and hang out for a visit. Mostly though I think I get my dose of AN therapy here online. You can share so much with so many others experiecning the same axieties but also successes. :)
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

GRACE1

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Re: Do you attend local support group meetings?
« Reply #2 on: July 03, 2008, 07:24:38 am »
You should definitely take advantage of this resource.  I went to my first (and so far, only) support meeting 3 months after I was diagnosed.  It was held in Atlanta, which is 3 hours from where I live in Central Georgia.  It was comforting to have personal contact with others who are in our select group.  I met a lady from near Atlanta that I keep in touch with.  She had GK about a month before I did. 
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

Jim Scott

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Re: Do you attend local support group meetings?
« Reply #3 on: July 03, 2008, 07:28:00 am »
Nicole:

I haven't attended any AN support group meetings but would consider it.  The success of the meetings depends on who organizes them as much as the interest of the attendees.  They can easily become 'pity parties' where folks just complain or where visiting speakers are really just selling something or an excellent source of information and support, as they're meant to be.  Sharing doctor and other information on a local basis is very helpful.  As a patient who had a good outcome to surgery and radiation, I'm not sure how much I would get out of such meetings because all I could do is offer encouragement, as I do here.  However, on these forums - that reach people all over the country and, literally, the world - I feel I can do a lot more for other AN patients.  Just my observation and, as I stated, I might consider attending a local meeting, however, the closest is almost 40 miles, one way, from where I live, so it probably won't happen, at least on anything like a regular basis.  However, if a support group is close to you, I would suggest you attend a meeting and see what you think and if it could be helpful to you. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sgerrard

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Re: Do you attend local support group meetings?
« Reply #4 on: July 03, 2008, 10:08:35 am »
I have been to three meetings of the local ANA group in Portland, Oregon. Among others, I have met forumites Daisy Head Maizy (formerly 4 cm), and Marg, and Jackie. I think I learn more here on the forum, but it is worth it just to meet people in person. Plus, no one cares if you say "what" a lot.

 I like 'em. :)

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.

jtd71465

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Re: Do you attend local support group meetings?
« Reply #5 on: July 03, 2008, 10:34:51 am »
I've been to several support group meetings in NJ (I'm on the board as a "Member at Large").  I have found all the meetings that I have attended to be very informative and have made several "friends".  I have found it best to talk with individuals that have just started their AN journey and share my successful outcome (the negative news can be overwhelming at times).

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Kaybo

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Re: Do you attend local support group meetings?
« Reply #6 on: July 03, 2008, 10:58:57 am »
No support group here, but I would go to one if it was POSITIVE and not, like Jim said, a pity party!   ;D

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!

cherrypiper

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Re: Do you attend local support group meetings?
« Reply #7 on: July 24, 2008, 05:50:55 pm »
they just started up a local Houston Tx support group in May and i attended. I was the AN with the least post time. It sure helped me and wife to see others listen to what they have done, and to have them tell me about where they were at my time.

Helped alot.................
10 mm x 2.4mm surgery date 12/03/07

glad to be here

Ellenmn

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Re: Do you attend local support group meetings?
« Reply #8 on: July 27, 2008, 09:42:54 am »
I went to a local group meeting just before I had surgery and plan on going to them again. I missed the last few because of conflicts but I believe they are a good thing

leapyrtwins

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Re: Do you attend local support group meetings?
« Reply #9 on: July 27, 2008, 06:54:24 pm »
I agree with Ellen.  I attended a meeting a few months post op and really liked it.  It's nice to get together with a group of people you have so much in common with.

Our local group stopped having meetings for a while because they were looking for a new leader.  They found one and had a meeting a few weeks ago.  Unfortunately, I was out of town and couldn't attend, but I'm looking forward to the next meeting.

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

chocolatetruffle

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Re: Do you attend local support group meetings?
« Reply #10 on: July 27, 2008, 09:53:59 pm »
hi nicole, i will attend a local support meeting if there is one around my area.   this ANA discussion forum do provide an alternate outlet for those who do not have a local support organization - I think the local group is better as it will provide an intimate and face to face support system.   hope this helps.

speaking of local support meeting, i see that there are brunches planned for seattle and NY.  anyone interested in brunches for Northern CA Bay Area (San Francisco, Palo Alto, San Jose?)
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

carlita

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Re: Do you attend local support group meetings?
« Reply #11 on: July 28, 2008, 06:37:28 pm »
Hi, i am also interest in a support meeting, where are them?
Carlita :)

MAlegant

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Re: Do you attend local support group meetings?
« Reply #12 on: July 28, 2008, 09:00:42 pm »
Hey Sabuck do you want to start a group midway between Columbus and Cleveland?  I agree that the forum is the most efficacious but it would be fun to get together and hang out and just share stories, maybe have a drink and some snacks, bingo, you know the usual support group stuff. What?  They don't do that in support groups?  If that's the case I'd just as soon drink and snack and play bingo while contributing to the forum.  Of course, we could always plan a forum reunion party.  Now wouldn't that be fun?
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.

leapyrtwins

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Re: Do you attend local support group meetings?
« Reply #13 on: July 28, 2008, 10:30:03 pm »
Hi, i am also interest in a support meeting, where are them?

Carlita -

I believe there is information on local ANA support groups on the main page of this website.  If not, you can always contact the ANA and ask them.

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

leapyrtwins

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Re: Do you attend local support group meetings?
« Reply #14 on: July 28, 2008, 10:32:17 pm »
Of course, we could always plan a forum reunion party.  Now wouldn't that be fun?

Forum reunion party = 2009 ANA Symposium August 14-16 @ The Drake Hotel in Chicago, IL.  Details coming soon.  Hope to see you all there!

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