We're AVM Survivors, Here For Your Support...
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Ben Munoz
- 32, Male
- Austin
- United States
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- Blog Posts (17)
- Discussions (317)
- Events (1)
- Groups (4)
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Ben Munoz's Groups
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Canada AVM Survivors
17 members
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Europe AVM Survivors
19 members
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Inoperable AVMs
60 members
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Parents of AVM
101 members
Ben Munoz's Discussions
New Member Introductions
Replied Mar 16
New Member Introductions
5 Replies
Started this discussion. Last reply by Cindy Nelson 1 day ago.
Ben Munoz's Events
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TAAF's 5th Annual Aneurysm & AVM Walk!
May 8, 2010 from 10am to 2:30pm – San Francisco- Fort Mason's Great Meadow
AVM-Free Since Aug 2008!
Gifts Received (4)
Hugging Bears
From stella
Pink & Zebra Hospital Gown
From Shalon
AVM Awareness Bracelet
From Scott Orn
Zombie
From Shalon
Latest Activity
For issues specific to parents of children with an AVM.
Ben,
Thank you for starting this organization. There is a great resource for support!
Karen, be strong. You are in my prayers!
Hey Kate! That is great! Hope your little one is recovering quickly.
Thank you all...the website has been a great help!
A group for Canadian AVM survivors.
Hey Kate, that is such wonderful news!!! We will be there a week from Monday (actually flying in on Sunday the 28th), it's always a comfort to hear good news from their facility....I know you must be so relieved..
Hi Everyone!
My name is Karen and I was recently diagnosed with my AVM on March 8th. It's on the Right Parietal lobe and thankfully in the cortex. It's about 2.5 cm in diameter and almost 1 cm deep. I'm still in shock and have been trying to deal w…
AVM Survivors, Friends and Family,
I hope this message finds you well. In 2 years since it was started, this little community of our's has become the #1 AVM support community in the world. Those who were diagnosed before this web site existed remem…
AVM Survivors, Friends and Family,
I hope this message finds you well. In 2 years since it was started, this little community of our's has become the #1 AVM support community in the world. Those who were diagnosed before this web site existed remem…
Kate- So happy things went well!
We are so happy for your family. Aren't those the best words ever. Big hugs to all of you.
Such wonderful news! I'm so happy for you and your family.
Sharyn, thanks for posting for everyone to watch!
I had an AVM rupture in 1996 on the right side of my brain, I now have partial paralysis on the left side, more specifically my arm and leg, as well as a bad short term memory, I had a Grand Mal Seizure w/ the AVM, then one in 2004 that is associate…
Profile Information
- Are you an AVM survivor, a relative, a friend, or a medical professional? (Required)
- AVM Survivor
- When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?
- August 30, 2006
- What is the status of the AVM?
- Obliterated
- How was the AVM treated?
- Gamma-Knife
- If treated, when was the AVM treated?
- February 18, 2007
- Describe the AVM (location, size) if you know it.
- Small posterior fossa (on top of brain stem).
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- Symptoms
I was eating dinner when I started having a headache and stiffness in my neck. Within 30 minutes I was vomiting uncontrollably. I went immediately to the closest ER.
Treatment
The closest ER was UT Southwestern in Dallas, which is, luckily, a top neurosurgery hospital with its own Gamma-Knife center. The ER surgeons diagnosed me immediately. I recovered from the bleed within a month and 4 months later I had Gamma Knife surgery with Dr. Jonathan White and Dr. Tony Whitworth of UT Southwestern.
Recovery
I had no serious complications for the first year after gamma-knife. The first 2-3 months I had some fatigue - sleeping all day and night. After 3 months, everything was back to normal.
March 2008 Update: Almost one year after the gamma-knife, I had started vomiting 2-3 times daily and the left side of my face started feeling a little numb. After a week of that, I went to the ER for a CT scan and a neurologist said I may have had a 2nd stroke. I had another MRI with my regular neurosurgeon who said that I had some radiation necrosis (damage from the gamma-knife). He put me on prednisone for a few months.
June 2008 Update: My May MRI and checkup went well. The prednisone has done some nasty stuff to my body, but it was a small price to pay to prevent brain damage from the radiation necrosis. The AVM continues to shrink and should be obliterated within the year. I don't have to tell you what a relief it is.
July 2008 Update: Still waiting for my next MRI. In the meantime, my body is slowly returning to normal from the side effects of steroids to reduce brain inflammation. Some facial nerve damage may be long-lasting, but minor (sensitive teeth, loss of some sensation).
August 2008 Update: Obliterated! Official confirmation will come with angiogram, but the MRI shows the AVM looks gone. I don't have to tell you what an enormous relief this is after nearly two years of walking around with a time bomb in my head. Wondering if today is this the day it ruptures again.
Best wishes to my AVM friends still in recovery. Hang in there.
May 2009 Update: No new updates. My last MRI showed no visible AVM. I haven't yet scheduled my angiogram. Some facial sensitivity remains but all is normal. To those learning about AVMs, don't be shy about asking other members for help - we've been where you are. To those still recovering, stay strong.
Dec 2009 Update: I'm happy to report it doesn't seem like I have any lasting brain damage from Gamma Knife. I haven't yet gotten my angiogram, but I will this spring for final confirmation the AVM is gone. Thanks for reading.
- Would you like to recommend a surgeon, therapist, or a hospital?
- Very satisfied with the treatment of Dr. Jonathan White, Dr. Tony Whitworth, and the staff at UT Southwestern (Dallas). Neurologist Dr. Pollack (Houston) has been very helpful also.
Lola (3 years old here)
Ben Munoz's Photos
Ben Munoz's Videos
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Amit's Story
Added by Ben Munoz
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Jeremy's Story
Added by Ben Munoz
Ben Munoz's Blog
March 2010 AVMSurvivors.org Newsletter
AVM Survivors, Friends and Family,
I hope this message finds you well. In 2 years since it was started, this little community of our's has become the #1 AVM support community in the world. Those who were diagnosed before this web site existed remember how lonely that was. Now thanks to all the wonderful people who have joined, anyone who finds our site realizes that they are not alone. We're in this together and we're here for your support.
… Continue
I hope this message finds you well. In 2 years since it was started, this little community of our's has become the #1 AVM support community in the world. Those who were diagnosed before this web site existed remember how lonely that was. Now thanks to all the wonderful people who have joined, anyone who finds our site realizes that they are not alone. We're in this together and we're here for your support.
… Continue
Posted on March 16, 2010 at 10:10pm — 1 Comment
Chat Room FAQ
Thanks to Gordon D and John Scott for their suggestions of a chat help page for us.
1. How do I start chatting?
There is a thin chat bar on the bottom every page. To start chatting, click on that bar. When someone says something in the chat room, you'll hear a faint beep. To reply, type into the box on the bottom and click ENTER.
2. How come no one in the chat room responds to me?
If you see people in the chat room and no one responds to me, don't take it personally. :)
It doesn't mean the… Continue
1. How do I start chatting?
There is a thin chat bar on the bottom every page. To start chatting, click on that bar. When someone says something in the chat room, you'll hear a faint beep. To reply, type into the box on the bottom and click ENTER.
2. How come no one in the chat room responds to me?
If you see people in the chat room and no one responds to me, don't take it personally. :)
It doesn't mean the… Continue
Posted on January 12, 2010 at 11:30am —
January 2010 Community Newsletter
AVM Survivors, Friends and Family,
We hope that you were able to spend the entire holiday season with loved ones. The new year is now in full swing and we have lots going on here.
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IN THIS ISSUE
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1. Welcome New Members
2. AVMSurvivors.org Reaches 1400 Members
3.… Continue
We hope that you were able to spend the entire holiday season with loved ones. The new year is now in full swing and we have lots going on here.
--------------------------------------------------------------------------------
IN THIS ISSUE
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1. Welcome New Members
2. AVMSurvivors.org Reaches 1400 Members
3.… Continue
Posted on January 11, 2010 at 5:04pm —
August/Sept 2009 Community Newsletter
AVM Friends and Family,
I hope this newsletter finds you well. Our "little" AVM survivor community has suddenly gotten quite large, which means 1) we are easier to find on Google for those newly diagnosed and 2) more people are getting the support they need during these trying times.
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IN THIS ISSUE
--------------------------------------------------------------------------… Continue
I hope this newsletter finds you well. Our "little" AVM survivor community has suddenly gotten quite large, which means 1) we are easier to find on Google for those newly diagnosed and 2) more people are getting the support they need during these trying times.
------------------------------------------------------------------------------------------------
IN THIS ISSUE
--------------------------------------------------------------------------… Continue
Posted on August 31, 2009 at 6:12pm — 6 Comments
New Facebook Page
AVM friends and family,
If you are on facebook, we have a new facebook page you can become a fan of.
Just another way to spread the word to others about the group and its wonderfully supportive members.
Ben
If you are on facebook, we have a new facebook page you can become a fan of.
Just another way to spread the word to others about the group and its wonderfully supportive members.
Ben
Posted on August 9, 2009 at 1:14pm — 3 Comments
Comment Wall (566 comments)
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Join AVM Survivors Network: Arteriovenous Malformation Support
- At 6:36am on March 18, 2010,
Larisa Diephuis said…
- Ben, I just wanted to thank you for starting thus site, this has been an amazing source of support and info over the last month after I learned about my AVM. I was terrified to fly with this in my head after it bursting once, but members confinedy docs info that I would be fine. I'm more scared of the crainiotomy that I'll be having (not sceduled yet) but talking to others here is helping me though that to! I'm in Boston now seeing docs at Mass General over next week, so I'm a step closer to a positive resolutio I hope. Thanks for creating all this, it's been such a great source of comfort and understanding for me!!! Thank you thank you thank you!!!!!!
- At 11:50am on March 17, 2010,
Dena Birchfield said…
- Hi Ben,
Well no serious ones. They did tell me if I didn't terminate my pregnacy I would not likely live through it. I was having a lot of seizures and a nine month long migrane. But I had my son and I am still alive. All the glory to God! Thanks for the comment Ben.
- At 5:11pm on March 16, 2010,
Lyn said…
- Hi Ben,
Besides some numbness in my right leg, which is probably permanent, and some forgetfulness, I'm actually OK.
I'm actually scheduled for a crainiotomy tomorrow and was on this site trying to read stories of those who have had the surgery and see whats their experiences.
Thank you for creating this site.
- At 11:35pm on March 13, 2010,
BeatleChick said… - Hello Ben! I hope all is well. :)
- At 4:22pm on March 13, 2010,
Eric Santos said…
- i will be off that day to spend some time at Staford hospital and visit with the Doc's and people that helped me along the way. then i will take my family, Mom, Dad, and Brother out to dinner. they were with me every step of the way of my treatments to say thanks again. thanks for the comment and the support.
- At 1:33pm on March 12, 2010,
Mindy DeLaTorre said… - Hi Ben,
I read your story, it sounds amazing! I hope all continues to go well... Thank you so much for this website where anyone can come to get so much support, encouragement and information. My cousin had a avm with a bleed recently. It was only then I found this site. It has helped me so much. Take care!
- At 1:16pm on March 12, 2010,
Tim Strouss said… - yes There are deficets but I'm hoping some of them will be over come with time.
- At 11:21pm on March 8, 2010,
Stephanie Sewell said… - Thank you, Ben. This group is a wealth of information. I have learned more in one day than I could've researched on my own for months. Thank you!
- At 1:26pm on March 08, 2010, stella gave Ben Munoz a gift…
Thank you for everything and i love the your new support page wow great progress.. Love you allways hope all is well
- At 9:24am on March 8, 2010,
Alexis Kaminsky said… - Thanks Ben. Sounds like you had a heck of an experience based on your story. When I had mine I could have really used a forum such as this. It's great that you started it!
Question: Did you have a big personal values shake up/re-examination as part of your experience?
Best,
Alexis
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