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 (16)
- Discussions (315)
- Events (1)
- Groups (4)
- Photos (3)
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- Videos (3)
Ben Munoz's Groups
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Canada AVM Survivors
14 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
100 members
Ben Munoz's Discussions
1000 Members Strong...and growing!
Replied 14 hours 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 all those living in Europe.
I know...crazy. We're at 1600+ now. You guys are amazing.
A group for Canadian AVM survivors.
Welcome to the group! My son is 11 and will have AVM surgery next Tuesday at Barrows in Phoenix with Dr. Spetzler. It is scary but with good docs, caring friends, and, for us, God, you get through it. : ) It is so wonderful your son is stable!
Welcome kzl!
Glad to hear your son is doing well after his bleed.
Hello all,
My son was just diagnosed with an AVM a few weeks ago. He had a left temporal hemorrhage in December. He is stable and besides the bleed in good health. We are just looking for some support and advice. We are terrified of what is to come…
For issues specific to parents of children with an AVM.
A group for Canadian AVM survivors.
For all those living in Europe.
A group for Canadian AVM survivors.
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
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Ben Munoz's Blog
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.
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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
May/June 2009 Community Newsletter
Friends and Family,
I hope this newsletter finds you well. May and June were busy months for our community. We helped send a group to San Francisco to participate in the 4th Annual TAAF walk, raising over $11,000 in funds for TAAF. We were also represented at a drag car race in Australia, courtesy of Michael Hunt. Another member began a campaign to distribute AVM Awareness wristbands. Plus, our community picked up some nice recognition from other web sites. Read below for details.… Continue
I hope this newsletter finds you well. May and June were busy months for our community. We helped send a group to San Francisco to participate in the 4th Annual TAAF walk, raising over $11,000 in funds for TAAF. We were also represented at a drag car race in Australia, courtesy of Michael Hunt. Another member began a campaign to distribute AVM Awareness wristbands. Plus, our community picked up some nice recognition from other web sites. Read below for details.… Continue
Posted on June 24, 2009 at 9:42pm —
Comment Wall (559 comments)
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Join AVM Survivors Network: Arteriovenous Malformation Support
- 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
- At 1:40am on March 8, 2010,
Kate Brennan said… - Hi Ben, sorry it has taken so long to reply - I don't go on here very often. Gamma is OK, I think I am lucky that I had that option to take. I do suffer from migraine as a result of my brain swelling - this happens to about 40% of people who take the treatment apparently. Still my 1 year MRI shows that the AVM is shrinking down nicely so fingers crossed. How are things with you now? x
- At 11:12am on March 7, 2010,
I'm Audrey's Dad said… - Thanks Ben. Audrey is chugging along with tons of therapy... not walking yet due to the stroke. But she is very determined to get her right side working again. Her determination should be an inspiration to all.
Thanks for all the work you do here at avmsurvivors.org!
Matt & Lisa (Audrey's parents)
- At 10:26am on March 7, 2010,
Gordon D said… - AUSTRALIAN AVM SURVIVORS GROUP Great ideal now you need a United Kingdom or Europe maybe
- At 9:27pm on March 5, 2010,
Erin said…
- Thanks Ben!
- At 7:27am on March 5, 2010,
Mare said…
- Thanks! Just tring to understand this wonderful site! We are all so blessed because of your foresight to help others and again, THANK YOU! Mare
- At 8:53pm on March 3, 2010,
Mare said…
- Ben: Just a question....what are the responsibilities of a community moderators? Thanks...just wondering. Mare
- At 11:20am on March 1, 2010,
Nora Nichols said… - OMGsh Ben I am so sorry. I didn't see your post until now. The top Neuros in my opinion although there are great many are these which I found happen to conduct the most research:
@ UPMC -- Dade Lunsford, Doug Kondziolka
@ UT SOuthwestern Medical -- Duke Samson, Jonathan White
@ Mayo - Rochester -- Bruce Polllock, David Piepgras
in Phoenix, ARiz - Bob Spetzler
@ ST. John's Health Center, Santa Monica, Ca: Amin Kassam
Hope this helps. DId your nephew's surgery turn out ok?
Nora
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