This group is for AVM Survivor members who live in the Southeast ... for sharing, support and occassional get-togethers.
Location: Raleigh/Durham, NC
Location: regional-group
Members: 111
Latest Activity: on Monday
Started by Cindy Phillips. Last reply by Wanda Robinson on Sunday. 31 Replies 0 Likes
48 members of the SE Group, let's get a tally of where everyone is located please. Several from GA and quiet a few in AL, FL, NC, TN, and VA. (I saw one person from SC on the AVM Survivor website but…Continue
Started by Greg Z. Last reply by Scotswoman Mar 17. 36 Replies 0 Likes
Nashville, Tn checking in.. Continue
Started by Cindy Phillips. Last reply by nikki haynes Feb 25. 29 Replies 0 Likes
Just a quick question for all those who has Dr. Barrow as their AVM doctor: Did you have to do anything 'special' in order to get an appt. with him? (I am extremely appreciative of my neurosurgeon in…Continue
Tags: follow, up, craniotomy, doctor, neurosurgeon
Started by Rebleenc. Last reply by Albert Jan 26. 3 Replies 0 Likes
My son is 26 years of age, we live in Raleigh NC. He just had a large 14cm by 14cm Avm removed at UNC Hospital with Dr Adam Zanation and Dr Trevor Hackman. Amazing physicians! Head surgeries are…Continue
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Hi Wanda and all you southeast avm survivors! I am currently planning out first annual southeast AVM survivor meet up! I am very excited about this and hope to see many of you.
Currently our meet up is scheduled for saturday August 3rd. It will be in Charlotte, NC (specifically located in Huntersville for all who want to google map it).
I am currently working on designing our shirts to signify the event. I will post the images of the shirt and cost within the next few weeks. I will be back later with more specifics.
can someone please let me know the nexts time the southeast avm group meets i would like to come
Comment by mamaginof3 on May 10, 2013 at 8:52am
Comment by mamaginof3 on May 9, 2013 at 5:21pm Georgia - I second Charlotte! I live in a northern suburb (Mooresville) and would do whatever I can!
James - Not sure of the time frame, but I had this exact thing happen almost 7 years ago. At the time, they told me the chance of recurrence was 8% a year, so if I were old, they wouldn't do it, but at 8% a year, I was young enough that it would definitely happen again. Mine was in a deep, weird part of the brain too and surgery was risky but we went ahead and did it because I was already invested...
After surgery, I was in ICU for a week, then inpatient therapy for a week, then home. a week after I went home, I did have a real stroke caused by all the messing around in my head, I guess. I have several workarounds now but there are a few things that are probably permanent damage. However, everything happens for a reason, and if that had not happened, I would definitely not be in the city and state I am in now or have the life I have now so while I have moments of feeling sorry for myself, I know that when I look at it big picture, it is all good!
What I wish in retrospect I had done was schedule surgery after I had a chance to get my life in order. It was all kind of emergency 2 hours from home for me, so there are things I did not feel prepared for. The surgery and subsequent stroke caused some things to be lost for me forever, so I wish I had saved some of those things (video/audio/handwriting) because they will never be the same. I think if I had done it within a month or two, I would have been OK. Since she has already had two, though, you may not have that luxury.
I would be happy to help with anything you need.
Comment by James on March 15, 2013 at 1:02am Hi All,
My daughter got two rupture 1st one 21st Feb 2013 she suruvived v well and 2nd one after angiogram 21st February 2013 this time her left side little bit weak which is gradually improving and hopefully within 10 days she will get fully recovered. Now I am worried what should i do some doctors suggest we should leave AVM because of its location and according to them surgery is v risky. One surgeon said we should go for surgery ASAP with 50% chances. What should i do I really dont know what to do. Might be there is no third time rupture............Can anybody plz tell me if there is any roughly average time of AVM rupture after first time rupture or second time rupture?
What are the chances of third time rupture?
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Posted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments 0 Likes
Posted by Fish on May 10, 2013 at 3:25pm 1 Comment 0 Likes
My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has…
ContinuePosted by Michael on May 2, 2013 at 3:14am 5 Comments 1 Like
Hello there,
how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…
ContinuePosted by tdz103m on May 2, 2013 at 5:34am 3 Comments 4 Likes
I don't know exactly when it happened because I slept through May 1, 2012. All day.
May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…
Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments 2 Likes
After being featured on a number of publications,…
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