AVM Survivors Network: Arteriovenous Malformation Support

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Aislinn Gannon anyone have any information on neuroaid?

i worry a lot with scams and i was just wondering if anyone has heard of it or has tried it?


it looks very promising

thanks,

Aislinn
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Added by Aislinn Gannon on March 13, 2010 at 10:40am — No Comments

Jessica Ables Difference between Radiosurgery and Cyberknife???

Hello everyone. I've gotten a ton of brochures in the mail as I am a candidate for both of these procedures within the next few months. I was just wondering what is the main different between Radiosurgery and cyberknife. Since my bleed I sometimes have a hard time comprehending all the medical jargon and mumbo-jumbo :-)

Maybe someone can put it into easier terms for me.

… Continue

Added by Jessica Ables on March 12, 2010 at 10:47am — 1 Comment

Mario Ontiveros Lacey Writes

keep fighting , Lacey March 11 2010. After being denied by Saint Johns I started calling around again, all of the local hospitals said that they couldn't help me. A nice lady at UCI told me to apply for MSI again and that after I got a rejection letter I could try to apply for their charity program. I went to the MSI office and applied. I was heartbroke when I found out it would take 4-6 months just to get my application reviewed and get a response. I started calling around again and this time… Continue

Added by Mario Ontiveros on March 12, 2010 at 6:53am — 6 Comments

Mario Ontiveros Great News For Lacey

Great News For Lacey This morning she was approved for MSI, That means she will get the surgery she needs at a local Orange County Hospital, she has many hospitals to select from. Does anyone know of a good Neurosurgeon working out of a Orange County Hospital ?? Lacey continues to amaze me with her persistence to succeed, She has been calling the local politicians and two of them have come through for her, Assemblyman Harman and Assemblyman Bass, both had there assistants call MSI on behalf of… Continue

Added by Mario Ontiveros on March 11, 2010 at 12:39pm — 7 Comments

Toni bracelets

How do we order the AVM bracelets? I cannot find the information I was given. Thanks Continue

Added by Toni on March 10, 2010 at 10:31pm — 2 Comments

stella 3-9-10 YOU KNOW I LOVE YOU ALL

FIRST I WANT TO THANK BEN FOR CREATING THIS SITE ITS AMAZING PLACE TO GET TOGETHER AND GET KNOWLEDGE AND THE LOVE AND SUPPORT FROM EVERYONE HERE,.. ITS OUR FAMILY.:))
I CANT THANK ENOUGH HOW YOU ALL BEEN SO SUPPOPRTIVE TO OUR FAMILY. THIS PLACE HELPED US.
JOHN HAS BEEN SUCH A REMARKABLE AMAZING AND SO MUCH FAITH AND LOVABLE KID. HE HAS BEEN IN FOOTBALL GOT HIS LETTER FOR THAT AND GOT AWARDS AND HE IS NOW IN WRESTLING MADE THE TOP FOR CHAMPIONSHIP GAME AND GOT HIS LETTER FOR THAT.
… Continue

Added by stella on March 10, 2010 at 7:02pm — 1 Comment

Katrina Rigdon Entry #3

It's Wednesday today and I'm feeling really guilty. I hate it when my boyfriend asks me to hang out with him; my answer is always no thanks, or something in that matter. If your wondering yes someone loves me and loves me a lot but I never return it, all he wants is to see me for even a few minutes. My family is frustrated with me because I basically ignore him, but we text.. doesn't that count?? It just makes me feel like a jerk it's… Continue

Added by Katrina Rigdon on March 10, 2010 at 3:36pm — 2 Comments

Mario Ontiveros Still Waiting

Thank you so much for the support, Nothing has changed with our medical situation, The doctor has still not returned our calls and messages, Today is 14 days since we were denied and since we have attempted to communicate with the doctor, I am really losing hope with him, But everyone tells me he's a doctor and very busy , perhaps he's trying hard for you and you just don't know about it, still very confused as to what going to happen, Lacey continues to seek other oportunities and it's more and… Continue

Added by Mario Ontiveros on March 10, 2010 at 5:17am — 3 Comments

Paul McMonagle Post-bleed recovery

Well, the doctor said it was "elusive." As such, something really cool/great/odd happened. February 10th, my avm bled. February 15th, I had surgery. Happy Valentine's to my lovely wife :-P. After a short stay at UAB, I'm back home. February is a wash. Doctors gave various and sundry pieces of advice of which I remember none. So God has brought me through yet another bleed. That's 3 for me. :) My eyesight is doing weird things, tunnel vision and such. My church family has been incredible. They re… Continue

Added by Paul McMonagle on March 9, 2010 at 1:37pm — No Comments

Reggie Seizures after AVM gamma knife

Hi everyone--
Question for you all: anyone have increased seizures or seizure symptoms after gamma knife? My husband was doing great on Zonegran for two and a half years, then had gamma knife in Dec., suffered three seizures right after that in the next few days. Docs increased his level from 400 mg to 500 mg. Still had symptoms, where his left hand would shake, which is his warning sign that a seizure is about to take place, but nothing came of it thank God. Doc increased his levels to 600… Continue

Added by Reggie on March 9, 2010 at 8:07am — 2 Comments

kzl Hello All

I am the mom of a beautiful eleven year old that had an intracranial hemorrhage last december. Just three weeks ago it was finally diagnosed that he has an AVM. We are terrified especially because doctors are saying that the true cure if for surgery. We are just looking for some support and maybe some past experiences. This is all new to us and we have had a really rough year. We now have two sick children and any advice is worth our time. thanks and hope to hear from our new AVM family soon. Continue

Added by kzl on March 8, 2010 at 12:28am — 5 Comments

margaret AVM WALK AUSTRALIA

hi to all my beautiful family.

just a quick one this time.

I WANT TO ORGANISE AN AVM WALK IN AUSTRALIA. can the guys who organise the Walk in the States get in contact with me to give me an idea of where to begin.

any of my AVM family from Australia pls contact me if you can help me.

♥ to you all xxx.

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Added by margaret on March 7, 2010 at 4:17pm — No Comments

Clare and Jacob Hi All, It's been a while!

Well I know it's been a while since my last update but this whole normal life is just so busy!
Jacob is doing brilliantly in every way, he is sports mad and has represented school playing rugby (never thought I would see that day, well I didn't I was too scared to watch) and he ran cross country and came 25th out of 59 which just proved yet again that he is my super hero.
He is also playing golf, short tennis, swimming and has recently taken up tai kwon do.
We will see… Continue

Added by Clare and Jacob on March 7, 2010 at 12:31pm — 1 Comment

james Seattle's new CyberKnife cuts straight to the tumor

A CyberKnife robotic arm also can reduce the number of radiation treatments from as many as 40 over eight weeks to about five or fewer over one week.
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Added by james on March 6, 2010 at 3:00am — No Comments

Jaszi Rose AVM CATCH UP - SYDNEY,AUSTRALIA FRIDAY 16TH APRIL 2010

HIYA ALL,

WELL I HAVE MY NEXT APPOINTMENT DOWN IN SYDNEY ON THE 15TH OF APRIL 2010 - AND I WOULD LOVE TO MEET AND CATCH UP WITH ANYONE WHO CAN MAKE IT IN SYDNEY ON THE FRIDAY 16TH APRIL - LET ME KNOW WHO WOULD BE INTERESTED AND WE CAN ARRANGE A PLACE AND A TIME!!

WOULD LOVE TO MEET WITH U ALL

XXOXOX

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Added by Jaszi Rose on March 5, 2010 at 9:55pm — 4 Comments

Mario Ontiveros So Frustrated, Still Waiting

My Daughter Lacey is have at a stand still now for 8 days, We are still waiting for the Doctor who volunteered to do her surgery pro-bono to call us, Lacey was declined by the hosptials charity group 8 days ago, we need to speak with the doctor but we are still waiting, We really don't know what to do, we don't want to get mad at the doctor who offers pro-bono but we sure would like to hear from him, we are really frustrated, as my daughter says she can't beleive her life is worth so little, if… Continue

Added by Mario Ontiveros on March 5, 2010 at 9:51am — 3 Comments

Alicia TWO YEAR ANNIVERSARY

well its hard to believe two years have passed...and gee what a journey it has been..and i would like to thank each of you that have been there with me along the way...well first being told i was inoperable and bound to die soon ..i found a wonderful surgeon who operated and gave me a second chance at life...it has been a long two years ...defying the odds all round...surviving a so called impossible operation...and walking again after being told by many doctors and surgeons i would never wal

… Continue

Added by Alicia on March 5, 2010 at 2:16am — 6 Comments

Shane Crotty ups and downs

when leaving hospital my dilantin level was increased ,i was having reguler blood tests and my levels were good,after a couple of months and after the latest blood test my lavels were still im the right range,yet i was feeling worse i left it go for a couple more weeks,but felt even worse.after another week no beter.my wife took me wo my local doc who said striaght to hospital i felt so bad i knew something was wrong.i was given another set of blood tests showing my dilantin was way to high i wa… Continue

Added by Shane Crotty on March 4, 2010 at 11:36pm — 1 Comment

Debbie Considine Blog/discussion/caution

It feels good to be back here today. I'm now trying to work on controlling my arthritis, which is what brought me to this site today.

My doctor had me on Relafen (nabumetone) and Skelaxin in order to control the arthritis that has been creeping up on me. For the most part they had been working well. But then I started to have problems with blood in the secretions that came out of my nose. They were frequent, so I made a mental note to ask my doctor about this issue during my ne

… Continue

Added by Debbie Considine on March 3, 2010 at 6:19pm — 3 Comments

Gemma Broughton Help me. Show me how to use this thing!!!!!!!!

Iv never been on chat rooms or anythin before. Using my son's computer, Totally computer illiterate and desperate for help. Been diagnosed with AVM. Had useless meeting with neurosurgeon today and could do with some INFORMED advice!!!!
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Added by Gemma Broughton on March 3, 2010 at 5:12pm — 4 Comments

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