Arizona....

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Arizona....

Postby Beckyinaz » Thu Mar 31, 2011 3:41 am

Hi! Just like Savannah, this past weekend at the Family Conference, I got inspired! So 2 things for Arizona I want to throw out there!

1. Most everyone here knows I live about 20 miles away from Barrows Neurological Institute at St. Josephs hospital. I have been known to go and visit anyone who accepts my offer for a visitor. I wont come up unanounced! SO, if you do come to Arizona for your surgery and would like a visitor from someone who has had surgery, just send me a private message and we will work out the details! My offer is always standing, I will always do my best to see you (if I am in town or am not sick)! ;)


2. I would love to set up a gathering of anyone in Arizona who would like to get together! We are getting short on time for something outdoors unless we want to sweat to death! SO, anyone interested please post and we will get a date and location set up! I know we did one several years ago at Kiwanis Park in Tempe.
6 screws now! Right Frontal Lobe CM ~ Craniotomy by Dr. Spetzler December 2006 ~ Also diagnosed with a Chiari Malformation (6mm) 2007 watching and waiting on that one.
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Re: Arizona....

Postby Fan of Barrow » Thu Mar 31, 2011 2:56 pm

Hey Becky,
I wish I could come down but it's a bit out of the way :lol: :lol:
I did have a dream yesterday morning that I went to an AA meeting and looked around and for the first time saw people with CA's. I remember in my dream I saw Kirk and thought, "wow, he came all the way from the French Alp's!!" Anyway's....
I could definately use some face to face emotional support these days, that is, from fellow CA'ers. I wish it was possible :( I imagine many of us feel these way quiet often. I would be lost without this forum that's for sure.
Good luck on your quest.
Linda.
Diagnosed with 2 cm cavernoma in Left Parial Lobe after gross hemorrhage in June 2008 at 37 years old. Had it resected by Dr. Robert Spetzler at Barrow Neurological Institute in Phoenix Arizona June 18th, 2010.
My surgery story: (formerly "linda_mom of 2")

http://www.angiomacommunity.org/ikonboa ... =2977&s=dr. spetzler
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Re: Arizona....

Postby Elizabeth » Thu Mar 31, 2011 7:03 pm

Hi Becky,
You are so awesome, we really appreciated our visit with you and your husband when I had surgery, thanks again!! And while AZ is a bit far, we have family in phoenix and sometimes come to visit, so I'll follow this thread and see if we can plan one of our visits around your meet up time. Not sure we would be able to come in the near future, as I'm still doing rehab..but we'll see. Thanks for all you do!!
Last edited by Elizabeth on Wed Dec 21, 2011 7:56 pm, edited 1 time in total.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Arizona....

Postby Beckyinaz » Wed Dec 21, 2011 5:17 pm

Hi guys!

I am going to put together an Arizona get together Saturday February 18th 2012. SO if you are close to the Phoenix area mark it on your calendars! Also if you have ideas or want to help let me know. I think a special visitor will be joining us, you wont want to miss!! :D
6 screws now! Right Frontal Lobe CM ~ Craniotomy by Dr. Spetzler December 2006 ~ Also diagnosed with a Chiari Malformation (6mm) 2007 watching and waiting on that one.
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Re: Arizona....

Postby q_leslie » Wed Jan 10, 2018 9:44 pm

Hello Anyone Out thereeeeee???? I know this forum is old and doesn't seem like no one has posted since 2011 or 2012, I'm in Phoenix and sure would like to be around some support out here. I has brain surgery Feb 2017 for cav mal, I still have a calcified one on the top of my head and one on the right side that "started to grow but no magor bleeds yet. I tired Facebook but there are no Arizona groups :| If anyone is interested in doing something in Phoenix please let me know.
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Re: Arizona....

Postby Elizabeth » Thu Jan 11, 2018 1:22 am

Facebook is probably ur best bet for activity. I'm not on face book though, so I don't know how it works exactly. Is there a way to do a search and see if anyone lives there...then private message them? Or you can try to private message the Becky in this old thread. She used to be very active and lived in Phoenix(she actually came to visit me in the hospital after my surgery in Phoenix)... But it was a long time ago. I'm not sure if she's still active at all or where she lives. If you find her, tell her I said hi! Xoxo
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Arizona....

Postby Elizabeth » Thu Jan 11, 2018 1:29 am

You might also be able to try Stephani Alband. She might know who is by you and be able to put you in contact with some people.

viewtopic.php?f=3&t=2339&p=13210&hilit=Stephanie+alband#p13210

Good luck!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Arizona....

Postby Connie Lee » Sat Jan 20, 2018 1:07 am

Facebook has an Angioma Alliance Pacific group that includes members from Arizona. Also, feel free to post in the main Angioma Alliance FB group. I know there are other in Phoenix for sure.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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