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AVM Survivors Network

Dr. Barrow (in Atlanta, GA)


#1

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 Gainesville; however, I believe I may need to switch to Dr. Barrow (as he's dealt with more AVM cases it appears).) Dr. Barrow's 'profile' lists him as "Bowman Professor & Chairman of Neurosurgery
Chief of Neurosurgery Service, Emory University Hospital Director, Emory MBNA Stroke Center"; therefore, I was unsure if there was anything 'special/extra' a 'new patient' needed to do in order to get Dr. Barrow (himself - & not just someone in the neurology dept., etc.). Please advise ANY information.

Thank you, in advance!


#2

Hi Cindy. HIGHLY RECOMMEND Dr. Barrow!!!


#3

Dr Barrow was awesome!!! I just called up Emory and asked for an appointment. I had seen 2 other neurosurgeons but after seeing Dr Barrow you just know you are in the best hands possible. Everyone at Emory has been so great to me as I just completed Gamma Knife treatment (Dec 30, 2010)…recommended by Dr Barrow. 110% recommend him!!!


#4

Hi Cindy, I just called Dr. Barrow’s office too and got right in to see him. However, I was evaluated and told that Dr. Barrow only recommended surgery. I decided to have a second opinion, because of the seriousness of having open brain surgery. I flew to Mayo Clinic in Rochester, MN who is #1 in the nation for AVM treatment. I saw Dr. Bruce Pollack who disagreed with me only having the option of open brain surgery. I spent a total of 3 days in MN, was treated, and able to come back home. The first day in Minnesotta I had consults all day, labs, etc. The second day in MN I had an angiogram and had gamma knife radiation treatment. We flew home on the third day and are so pleased we did that. I don’t know what your circumstance is, but in my case gamma knife turned out to be the best option for me. My AVM is small, but is located deep in the cerebellum of the brain. I was able to send all of my medical records to Mayo before making my trip for a second opinion. I recommend that you conduct research and have a second opinion if at all possible. Good luck and may God bless you!


#5

I was just told if I have to have brain surgery on my avm he is the best in Georgia. Are you planning on having surgery again? My avm is much different because its in 3 or 4 different places deep in the left side of my brain. So my diagnosis is wait for something to happen then treat that part that is having the problem because trying to remove it all will destroy to much of my brain. Causing a major life impact…


#6

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?


#7

Hi Cindy. When you see him…tell him a former Eastern Airlines Flight Attendant remembers him!!!



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?


#8

Hi Cindy, wow you do live close to me. I am so sorry your AVM has hemorrhaged and you are experiencing problems with your vision and left side. Dr. Barrow's office did schedule me within a week or two I believe and you can probably get in there very soon. If not I would have your primary care doctor call them and ask them to work you in or ask to go onto the cancellation list. I agree with you about wanting to get a doctor that treats AVM's on a regular basis. I had to go to the hospital one night and the paramedics weren't sure what an AVM was. Luckily, I have a folder with a lot of my medical records, medications, and information about AVM's so they were able to read the literature and get the information they needed. In the event of hemorrhaging our best alternative would be Emory rather than the hospitals in our area. I hope you get a fast response from Dr. Barrow.


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?


#9

I will.

Barbara Hanson said:

Hi Cindy. When you see him...tell him a former Eastern Airlines Flight Attendant remembers him!!!!

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?


#10

Thank you SOOOOOOOOOOOO much!

Close = yes. 'We' (AVMers) are here... how sad &,yet, so comforting.

Medical folder = I plan on doing something (like a USB flash drive/thumb drive) with my medical information on it for 'just in case'. I haven't had the time to sit down & work on it yet though.

Sherry Buchanan Myers said:

Hi Cindy, wow you do live close to me. I am so sorry your AVM has hemorrhaged and you are experiencing problems with your vision and left side. Dr. Barrow's office did schedule me within a week or two I believe and you can probably get in there very soon. If not I would have your primary care doctor call them and ask them to work you in or ask to go onto the cancellation list. I agree with you about wanting to get a doctor that treats AVM's on a regular basis. I had to go to the hospital one night and the paramedics weren't sure what an AVM was. Luckily, I have a folder with a lot of my medical records, medications, and information about AVM's so they were able to read the literature and get the information they needed. In the event of hemorrhaging our best alternative would be Emory rather than the hospitals in our area. I hope you get a fast response from Dr. Barrow.


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?


#11

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?


#12

Thank you, Debbie. Hopefully, the insurance company won’t take their sweet time on getting you a referral. Hope all goes well for you with both procedures!!!

Debbie Noto said:

Hi, Cindy. I live in Alpharetta and was diagnosed with an AVM on September 25, 2010. I had an emergency angiogram at Emory at that time then a follow-up appt with Dr. Barrow. I'm waiting now for a referral from my insurance company so that I can return to see him and schedule my embolization and craniotomy. I swear...everywhere I turn and explain what I have, someone says "Do you know about Dr. Barrow at Emory?". My dentist has been friends with him for 30 years and told me some really nice personal things about him that made him seem more personal and less clinical. I believe he will be the best choice for removing my AVM surgically. When I made the first clinic appt. with him, I got right in, so I would think you should too. Good Luck! -Debbie

#13

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?


#14

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?


#15

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?


#16

They said it could possibly change my life as in normal every day things. Speech, motor skills personality. Every nerosergin I have ever talked to has said they way it is now the best thing for my quality of life is to just keep monitoring it. And if a week spot or aneurism occurs to fix it then.. And my drs don't expect anything occurring. To me it has been stable for my life time why mess with it..


Cindy Phillips said:

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?


#17

I understand your point and view... and I'm not trying to get you to do anything against what YOU have choosen for yourself; rather, I am merely asking so you are confident in your decision with the complete knowledge that you are 100% aware of all the options for you. (More & more, I see all types of physicans NOT telling their patients EVERYTHING they SHOULD and that REALLY bothers me to no avail.)

Which two neurologists were your physican again? Are you doing anything 'special' to help ensure your safety by not doing anything that would 'promote' a bleed to occur?

Brian Hursey said:

They said it could possibly change my life as in normal every day things. Speech, motor skills personality. Every nerosergin I have ever talked to has said they way it is now the best thing for my quality of life is to just keep monitoring it. And if a week spot or aneurism occurs to fix it then.. And my drs don't expect anything occurring. To me it has been stable for my life time why mess with it..


Cindy Phillips said:

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?


#18

Dr. Edward Goldstein and Dr. Michel Lacy. I know my options.. I am completely confident in my decision.. I know all the options and have reaserched into them. If it was a single cluster like a traditional avm I would probably get it treated..

With unruptured AVM's there is no proof on weather interveaning or not interveaning is better or not. There currently is actualy a reserch study on this..

http://arubastudy.org/frameSetDescripTrial.html

To prevent a bleed I have stopped riding roller coasters or do anything rough like that and im trying to get in shape and eat healthier. The only thing I was told to make sure in watch is my blood pressure.



Cindy Phillips said:

I understand your point and view... and I'm not trying to get you to do anything against what YOU have choosen for yourself; rather, I am merely asking so you are confident in your decision with the complete knowledge that you are 100% aware of all the options for you. (More & more, I see all types of physicans NOT telling their patients EVERYTHING they SHOULD and that REALLY bothers me to no avail.)

Which two neurologists were your physican again? Are you doing anything 'special' to help ensure your safety by not doing anything that would 'promote' a bleed to occur?

Brian Hursey said:

They said it could possibly change my life as in normal every day things. Speech, motor skills personality. Every nerosergin I have ever talked to has said they way it is now the best thing for my quality of life is to just keep monitoring it. And if a week spot or aneurism occurs to fix it then.. And my drs don't expect anything occurring. To me it has been stable for my life time why mess with it..


Cindy Phillips said:

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?


#19

Hi Cindy,

Dr. Barrow removed my AVM in 1996. He has and forever will be at the top of my list when it comes to doctors! You will know when you meet him that he is a very confident and skilled surgeon. It brought me a great sense of comfort the day of the surgery to know that I was in the hands of someone who is an expert in his area of speciality. It is not hard at all to get an appt with him. Wishing you the best for your recovery!

Paula


#20

I've been reading some more of my medical records today (Tuesday, actually) and I am doing a 'double take' at what I am reading (= absolutely stunned/shocked). Some of my medical records refer to my 'ordeal' (as I call it) as an "AVM" and another says "AV fistula" ("AV fistula resection of the 4th ventricle involving the choroid plexus" and "suboccipital craniotomy"), so now I am uncertain which is/was the case (AVM or AV fistula) & the whether or not there is 'potential' for AV fistulas to potentially 're-grow' (such as the case with AVMs).

(According to my medical records, an angiogram was performed on me right after my surgery at the hospital ('VERY potent hospital drugs' allowed me to not recall this event happening... nor the majority of the things that occurred during my 35 day stay in the hospital actually) and it showed no 'residual' left (THANK GOD) of the "AVM".) At my 6 month neurosurgeon follow-up, I had a CT scan (without contrast) done (instead of an MRI/MRA or angiogram). (I admit that this greatly bothered/unnerved me & was puzzling to me after I read others on here say (& also through my own research) that angiograms are the 'gold standard' to detect whether an AVM is actually gone or if there are any 'residual' left of it.) Since the angio that was performed post surgery in the hospital showed no residual was left after the surgery and CT scans are supposely good for detecting hydrocephalus, I can only spectulate (via an 'educated guess') that the immediate concern/danger would been reoccurrence of hydrocephalus; therefore, a CT scan was performed to check for any re-occurring hydrocephalus (which was not the case - again, THANK GOD).)

John & Dewey (& anyone one else with pertinent knowledge): Can you please provide me with any & all information you know about AV fistulas? Recurrence rate, is/are there any incident(s) of OR potential chance there could be multiple AV fistulas in the body (whether it's solely in the brain or in the brain & other body parts, etc.), a would the same 'guidelines' for HHT apply to people that has/had an AV fistula as it does for AVM, etc.? (I realize that AV fistulas are rarer than even the rareness of AVMs; therefore, ANY & ALL information you can give me would be GREATLY appreciated.)

Hope everyone is doing well!!!