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Tony Monrovia, CA United States: Share on Facebook

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Inoperable AVMs

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Novalis T.X.

Hello. I have not visited in awhile, so sorry. Just been busy with everything. My daughter was diagnosed with diffuse/multiple AVM (actually 6 spots). I have had many opinions from experts…Continue

Started Sep 10, 2010

Glimmer of hope
2 Replies

Started this discussion. Last reply by Joy Apr 14, 2010.

Just received a call from Dr. Spetzler's office. Morgan has a very alrge diffuse avm which is inoperable. I can't bare this as the only hope is now rolling the dice of 2-4%/yr. I am sorry to share…Continue

Started this discussion. Last reply by Dale L Wamsley Sr Jun 4, 2010.

pos. stories
11 Replies

The more I dwell into the depth of AVM and the more I apply the knowledge I so delved in finite math over 25 years ago, I cannot help but revisit the stupid probablilty of the cumulative effects of…Continue

Started this discussion. Last reply by Jake M Sep 23, 2010.

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Patti G replied to Tony's discussion 'neurosurgeon'

I would recommend Dr. Gary K. Steinberg @ Stanford http://med.stanford.edu/profiles/Gary_Steinberg/ & team http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html. Dr. Steinberg has done 3 of my 4 surgeries - great dr!

Nov 4, 2011

Tony updated their profile Jan 20, 2011

Tony updated their profile photo Jan 20, 2011

Xtinnnne left a comment for Tony

I read that youre daughters doctor is Dr. Martin at UCLA. I have researched him because I have been thinking about getting a 2nd opinion. How do you feel about Dr. Martin? I dont want to waste my time going through a referral process if other people…

Oct 17, 2010

Jake M replied to Tony's discussion 'pos. stories'

I beleive that if someone were to do a search on my posts here, they would see a variety of positive and negative comments. I do not beleive there is anything wrong with allowing oneself to feel every single emotion that comes as a result of dealing…

Sep 23, 2010

Hanne replied to Tony's discussion 'pos. stories'

Tony: I believe that positive thinking is a wonderful tool for quality of life in itself. Having hope for the future is not the same as if there are treatment options or not. Not to have too much focus on all the things we may not do, or that there…

Sep 23, 2010

Ron, Kansas replied to Tony's discussion 'pos. stories'

Yeah Tony and Morgan!!!!!!!!!!!!!!!!!!!! Well, first off, NEVER lose hope, especially when the Drs say they can't do anything. That's the same prognosis we received when my wife's AVM showed up about 1991. The neuros said the only…

Sep 23, 2010

LAURA BESSER replied to Tony's discussion 'pos. stories'

5 years ago i had an artery blow up in my head.it is a miracle i lived. i take no meds.have had 6 brain surgeries.was in a coma.was life flighted. told my girl i wuld die which still pisses me off.i'm getting married at the end of the year.i…

Sep 23, 2010

Tony replied to julia daly's discussion 'Reoccurance of AVM'

Good luck. I hate this thing more than taxes.

Sep 10, 2010

Tony replied to julia daly's discussion 'Reoccurance of AVM'

My daughter has AVM and I have researched alot into this matter. It is a confusing world, but I have heard that some AVM show up better when one has been closed. I have also heard that AVM can occur independently through recruitment. The most…

Sep 10, 2010

Novalis T.X.

Hello. I have not visited in awhile, so sorry. Just been busy with everything. My daughter was diagnosed with diffuse/multiple AVM (actually 6 spots). I have had many opinions from experts advising for conservative managment. However, I recently returned from another meeting with Dr. Desalles of UCLA. He is recommending that that treat my daughter with the Novalis T.X. They just installed the newest one early 2009 which is more accurate and precise. Anyways, I am somewhat confused…See More

Discussion posted by Tony Sep 10, 2010

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Kellie Calvit left a comment for Tony

Happy Birthday!!!!!!! I hope you have a wonderful day!!!!!!!!!!!!

Jul 21, 2010

Dale L Wamsley Sr replied to Tony's discussion 'confirmation'

Tony, Can it be glued closed? That's what they did for my spinal avm. dale

Jun 4, 2010

Joy replied to Tony's discussion 'Glimmer of hope'

Thanks Tony, That was not mumble jumble at all - That was reallly informative. As for your daughter's AVM, my heart does break for you but you are right that it is good news that there are multiple draining veins. I had not heard of a…

Apr 14, 2010

Marie Hudson replied to Tony's discussion 'Glimmer of hope'

Tony, Thanks so much for posting this! Our thoughts and prayers are with your daughter, you, and your family, your determination is amazing! Blessings! Marie & Steve

Apr 13, 2010

Glimmer of hope

Well. We have been doing a ton of research and been getting some feedback from the best AVM specialist around the country. I hope I can be of some use with the research I have done regarding AVM. Regarding my daughter's situation she has a very unique diffuse AVM which is more spread out than a normal diffuse. Bad news is it is inoperable due to the brain coverage since any of the three treatment options will cause serious damage. That news basically brought me to my knees. The good news…See More

Discussion posted by Tony Apr 13, 2010

2 Comments

Profile Information

Are you an AVM survivor, a relative, a friend, or a medical professional? (Required): Relative

When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?: December 3, 2009

What is the status of the AVM?: Active

Describe the AVM (location, size) if you know it.: Diffuse AVM left

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): My sweet 9 year old daughter had partial paralysis during cheerleading in late November 2009. We br4ought her in the next day and conducted a MRI on the day after seeing her doctor. The neurologist said that it was a tiny superficial AVM and it would be a snap to cure her. After conducting an angio the Radiologist says it is diffused and inoperable on 3/26/10. I am in need to find a cure. I can't accept this.

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At 3:36pm on October 17, 2010, Xtinnnne said…: I read that youre daughters doctor is Dr. Martin at UCLA. I have researched him because I have been thinking about getting a 2nd opinion. How do you feel about Dr. Martin? I dont want to waste my time going through a referral process if other people think poorly of him

At 10:13pm on July 20, 2010, Kellie Calvit said…: Happy Birthday!!!!!!! I hope you have a wonderful day!!!!!!!!!!!!

At 5:11pm on April 11, 2010, Rachel said…: thinking of you........may I ask what do they mean by diffused? I have an avm on my left parietal lobe and although surgery was not an option due to high risk I was able to have two embolizations followed by stereotactic radiation. Could you get a second opinion?

Rachel

At 2:48pm on April 3, 2010, Joy said…: Hi Tony. I just replied to your post with lots of blah blah! I wanted to say that I am thinking of you after reading about your daughter's diagnosis. It is such a diffiucult time but from what I have read, you are doing a great job in finding out all you can about her AVM and any possible treatments. In the beginning, I did a few things to make my son as safe as possible IF he should have a bleed. Let his school and friends know what to look for, got him a medical alert bracelet, got him a phone to call us if needed and I keep my cell phone on 24/7 even now. Mentally all this helped us both cope.

I also wanted to say I've read of a few people who have had their AVM treated in sections or stages with Gamma Knife and I wondered if they could possibly do that for your daughter? Anyway, I guess you could ask the question.
If I can help out in Canada at all, please let me know. Dig deep and stay strong. Any questions, just ask.

At 1:06pm on March 2, 2010, Gordon D said…: Tony
Their are a few member that have diffuse AVMs
http://www.avmsurvivors.org/profile/LeeandChanelBrenner
http://www.avmsurvivors.org/profile/Trish14
http://www.avmsurvivors.org/profile/NoraNichols
Hope this helps Gordon

At 4:41am on December 9, 2009, Alicia said…: tony,
i know...what you are going through at the moment...the inital discovery and having to take it all in along with all the research and trying to find out absolutly everything possible to fight this beast...stay strong and keep positive and know that we are all here for you ...if you have any question please just ask ...im always here for a chat....sending both you and your daughter lots of positive energies to help you both through this journey

At 6:13pm on December 8, 2009, Deb C. said…: Hi Tony,

Welcome. You might want to join the Parents group as well. Thre are other parents who have had to face the same questions that your are now facing for your daughter.

All the best,

Debbie

At 10:37pm on December 7, 2009, Alicia said…: hi tony,
welcome to a great group...full of wonderful people and heaps of info...how is your relative doing?