AVM Survivors Network: Arteriovenous Malformation Support

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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 — 3 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 — 3 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

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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

Bridget Fitzgerald 21st Birthday!! HELP!

Heyy everyone!!

Sooo Friday is my 21st birthday and I am confused with what I should do for it. I was hoping to hear from you guys if any of you drink and if so how much? It has been almost 3yrs. since my bleed and I am only taking Topimax for Migraines and Seizures. Now i know that i need to be careful because I did have seizures in the past but when i talked to the doctor, of course they are not going to want me to drink. The Doctor told me i could only have 1-2 sips of alcohol (haha

… Continue

Added by Bridget Fitzgerald on March 2, 2010 at 10:41pm — 6 Comments

jessica moving forward

Hey everyone. first off i want to thank everyone from the bottom of my heard for the love and support i have gotten here. there are a great group of people here but i feel it is time to move on and i plan on deleting my account in about a month. avm discovered jan 08, gk mar 08, mri showing swelling and no avm feb 09, angio showing no sign of avm feb 10. the past two years have been a roller coaster and i feel i need to move on. i will be seeing my surgeon in about a month (couldnt get in for

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Added by jessica on March 2, 2010 at 4:27pm — 2 Comments

Andreas Juul Sorensen Preparing for surgery

Dear all, Was diagnosed with an AVM (grade 3 on Spetzler-Martin) in the Cerebellum in July '09. No symptoms ever, it was an incidental finding after a snowboard accident. I am scheduled for treatment at Barrows, Phoeniz, Arizona on March 16-19 2010. First up is embo, then surgery. The last months has been okay, I have accepted I have the "thing" in my brain and just want to get it out. Feel lucky that I discovered it before it bled; I can go to the best doctor in the world; and it is rather l… Continue

Added by Andreas Juul Sorensen on March 2, 2010 at 2:13pm — 7 Comments

JW Faith/Hope help please i hurt every day

please someone help me i am always in pain if is not my head is my body mostly my shoulder when the pain happens at the same time i don't know what to do with myself i can't see my doctor cause i don't have any health insurance my husband is going to put me on his but i have to wait till enrollment and that is in march or the end of march i been holding back on taking my meds as the doc prescribed so it would last but now i am out and i am getting very much headaches about every d… Continue

Added by JW Faith/Hope on March 1, 2010 at 7:25pm — 2 Comments

Melanie Spinal AVM

Want to know more about spinal AVM and treatments. I have been suffering for more than 20 years. I have had 5 successful embos but the last one, I believe, did not go well. I am feeling worse than I was feeling before the embo. I hope that this is temporary. Please could anyone with the same problem share experiences? Continue

Added by Melanie on March 1, 2010 at 3:01pm — 1 Comment

Janine Well well how time flys!

Well it has nearly been a year since I had the radiotherapy done and I feel so bad as it has been a long time since I have been on here and chatted, well I do check in and try to offer new members my support as it was given to me. I still find myself every day counting my blessings, I also find myself so angry some days, well selfish as to why I got this avm. Is it right that I listen to people going on about trivial things and really am thinking oh my gosh you are so a

… Continue

Added by Janine on March 1, 2010 at 1:02am — 2 Comments

Lucky Mae Quilao Week 82

I realized things this month.

Writing would just be a hobby for me. It would remain my first love though, and it would continue to be so till I can be efficient on it again.

Love manifested to me the hard way. I've felt it nonetheless.

I have to be stronger than what I should be. It's the only way I can be strong.

Times up for words of reassurance and comfort. I've already been lucky.

According to
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Added by Lucky Mae Quilao on February 28, 2010 at 11:00pm — No Comments

JW Faith/Hope pain

hello all i have not been on for a while just thought i would give you all an update i still don't have any health insurance yes i did apply for medicare and they just told me that my house income is too high but if that's the case why am i havin trouble paying my bills but since i did not get fisio for a couple a month now i get pain in my knee,shoulder and my hand all on my left my affected side of my stroke i wonder is this has happen to anyone after there stroke is this regula… Continue

Added by JW Faith/Hope on February 28, 2010 at 8:21pm — 3 Comments

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