Glad to know that there are no weak spots, etc. Out of curiosity, let me ask you this then: can they not try to fix one ‘cluster’ at a time?
Brian Hursey said:
Iv seen the scans and researched into it over the past couple years. It is not one cluster its about 4 - 5 clusters spread throughout the left brain. The CTA layed it all out in a 3d model. There are no weak spots or aneurisms. Mainly they are not the traditional clusters of a normal avm they are malformed veins. Some are tangled some are not. Talking with him they are away from the high pressure areas. So really im not looking at fixing it because in my case fixing it will cause to much damage because they would have to treat multiple parts of the brain lessening blood flow to important parts of my brain. He along with all the other seargins said it would be crazy to try and treat each area. It would cause to much damage. Basically of one area shows trouble we can treat that one area. So I am one of those rair cases I guess where the best option and safest option would be to wait and see. He said given the vein structure if I bleed it would most likely be a slow bleed. So I would know it. And he says there is a very good chance it may never bleed..
Here is one of the scans.. http://farm5.static.flickr.com/4038/4501126720_8880365363_o.png
Cindy Phillips said:Glad to hear it has not changed (for the worse, that is)! Reviewed in 1998...12-13 years later = there may be better options for you now. Worth checking into, at the very least because it is your health (& I believe you do have a little one at home, which I'm sure she wants you healthy & around for as long as possible). (Girls really do grow up to be 'Daddy's girl'.)
Brian Hursey said:I have had 2 neurologist in my time my current one specializes in avm's and sleep disorders and my case in 1998 was reviewed at the national neurological convention as a case study and they all concluded it would cause more damage to try and fix it then wait and see. They said most likely i will live a full life without it ever bursting. I get a scan every 2 years to look for changes in the structure that would cause issues. So far nothing. Although I need to get in shape so blood pressure wont be an issue when im older...
Cindy Phillips said:
Hi everyone! Thank you ALL for the information!!! I GREATLY appreciate it!!!
Sherry: I had emergency brain surgery because mine burst & hemorrhaged in Aug. 2009. The hemorrhage caused me to have a hemorrhagic stroke, which effected my left side (I write with my left hand) and my vision, so complete recovery efforts have been 'hindered'. I moved to Habersham county (originally from the Habersham county area but have made Hall county my home for approx. 10 yrs. prior to my AVM ordeal - with you being in White county & your mother in Stephens county, I assume you know the quiet area of Habersham county -) a few months ago and trying to re-establish some 'normalcy' back into my life and get fully recovered.
Barbara, Denice, & Sherry: Did you have to wait a long time (weeks, months, etc.) to get an appt. with him after you called Emory for an appt.? (I have an appt. with a neuro-opthalmologist at Emory's Eye Center (near Dr. Barrow's office, it appears) on Tuesday (1/18/11) to hopefully figure out why I STILL (after almost 17 months post surgery) have double vision and find a managable 'resolution' to this problem. I made the appt. 4 or 5 months ago (apparently, there aren't any NEURO-opthalmologists within the NE GA area - Atlanta's Emory Eye Center is the closest place I've found).)
Denice & Sherry: Congrats. on the Gamma Knife treatments! Sooooooooo happy for you two!
Barbara: Thank you for the extra personal information you shared with me privately!
Brian: I hope to NEVER have to go through this again. I don't plan on having surgery again and I am extremely grateful for Dr. Schultz (in Gainesville) but I just think I should be seeing someone with more knowledge about AVMs. (I still really find Dr. Schultz very skillfully competent & I do like him/his mannerims, etc. but I think I should (also) see someone who has more experience with our 'rare' issue (AVM). I have a follow-up appt. with Dr. Schultz on 2/01/11 & I plan on keeping it. I'm so tired of not being able to COMPLETELY trust ANY of the doctors to 'have our backs'/our best health interest & having to research EVERYTHING for myself (& right now, I just don't have the time to do that) about our rare condition.) Did you ever find yourself another neuro doctor? Did you get another opinion (or a recent opinion, etc.) about your 'wait and see' option? Have you seen Dr. Barrow or anyone outside of GA about yours?