Comment

Comment by Georgia Thompson on Monday

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.

Comment by Georgia Thompson on Monday

Comment by Wanda Robinson on Sunday

can someone please let me know the nexts time the southeast avm group meets i would like to come

Comment by Wanda Robinson on Sunday

Comment by mamaginof3 on May 10, 2013 at 8:52am

Are any of y'all from south AL or GA or Northwest FL? All research I have done so far points to uab and kirklin clinic. I know there are three or four neurosurgeons there. Any suggestions on which one to request? Thanks and God bless you all :)

Comment by mamaginof3 on May 9, 2013 at 5:21pm

I am from Dothan Alabama

Comment by Kkbrink on March 15, 2013 at 1:06pm

Georgia - I second Charlotte! I live in a northern suburb (Mooresville) and would do whatever I can!

Comment by Kkbrink on March 15, 2013 at 1:04pm

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 nikki haynes on March 15, 2013 at 6:33am

James, where is her avm located?

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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