We are AVM survivors, here for your support.
Emotional Support (28)
| Featured Discussions |
|---|
 In need of POSITIVE brain surgery storiesIn exactly two weeks I will be getting brain surgery to get an AVM removed. At the age of 25, this will be my first surgery ever, so as you… Started by CaityLatest Reply |
| Discussions | Replies | Latest Activity |
|---|---|---|
 Very scared after having two seizuresHello, i am hoping someone will be able to help me / advise me. I received radiotherapy for an AVM on my left temporal lobe, my neurosurgeo… Started by HELEN GRIFFITHS |
5 |
May 14 Reply by Louisa |
 I Wanted to Talk to SomeoneI Want to Talk to Someone for me … for my thoughts … for my fears I was diagnosed with an AVM in my right leg when I was almost two years o… Started by tania |
16 |
Apr 28 Reply by tania |
What happened to me?After surviving and recovering from an AVM, brain aneurysm and stroke that left me weak on my left and right side, My life was turned upsid… Started by Anastasia Jelich |
12 |
Apr 21 Reply by Madeline |
 What am I to do now?The last year has been an up hill battle and because of everything that has happened I have lost some of my friend, but it has made me real… Started by Erin Kamery |
14 |
Apr 20 Reply by Mare |
 Can AVM patient live long?Hi I just want to know if there had a patient of AVM that not treated yet that live long.I'm only 25 years old when I discover that i had B… Started by Mary |
53 |
Apr 14 Reply by Mary |
 WHAT NOW?I am so overwhelmed with everything that is going on. I worry every day about a seizure or a bleed. I'm afraid to do anything that would ca… Started by June Canaski |
6 |
Apr 10 Reply by June Canaski |
 what brain injury survivors want you to know! - a great read!Hey everyone, I saw this on the AVM facebook page, and wanted to share with those who haven't seen it yet. It's a wonderful read for family… Started by Emily K |
0 | Mar 30 |
 being compared to other problems.I'm 18, and I've had my main AVM in my left calf for over two years now which is roughly the size of my fist, and it can't be fixed. I have… Started by Alinta |
11 |
Mar 24 Reply by Holly |
 Questions for the NeurosurgeonMy appointment is Monday. Can you please help me make up a list of questions. I know nothing much about this except what I learned today. Started by Jappy |
2 |
Mar 23 Reply by Patti G |
|
Moderator Advise PleaseI had my massive brain bleed in 2007. Due to what I was left with in brain damage, I have worked so hard the past 4 1/2 years to take care… Started by Louisa |
33 |
Mar 22 Reply by Erin |
Follow AVMSurvivors and Ben's Friends
To Support AVMSurvivors.org, Click an Ad. Or Two.
Powered by BensFriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Photos
Blog Posts
Counting Down The Days...
Posted by Sam on May 27, 2012 at 3:30pm 0 Comments 0 Likes
I'm counting down the days!!! At the end of June 2012 i have to go to the hospital for another Angio.
Hope to hear good news, that the Embolization and 2 Gamma Knife treatments where succesfull and that after 7 years of fighting the AVM is…
What up with my ear???
Posted by kristi on May 26, 2012 at 3:17pm 3 Comments 0 Likes
I had a bruit when I had the AVM. It was there all my life. I guess everyone hears it at some point but as an "AVMer" mine was ALWAYS present. We became friends:)
My bruit was my connection to my heart, so I always thought (when I never…
MRI or angio?
Posted by stephanie on May 26, 2012 at 1:24pm 4 Comments 0 Likes
Click here to visit my latest blog post. If anyone could shed some light on the conclusiveness of MRI and angio, it would be great! The surgeon…
Continue
Stage one complete
Posted by existentialmom on May 25, 2012 at 4:48pm 2 Comments 0 Likes
Merlin came through the first gamma knife well, and we are scheduling stage 2 in August. Her treatment time was 152 minutes! No side effects yet.
We are relieved, but holding our breath against the next 3 months, 6 months, 1 year, 3 years,…
Continue
Thank you
Posted by Cat D on May 25, 2012 at 3:14pm 2 Comments 2 Likes
I only got accepted to this site yesterday and already I feel at home. I hope that this will be good for me and my mom who also was accepted yesterday. We both have been through a lot in the…
Continue
May 2012 AVMSurvivors Community Newsletter
Posted by Ben Munoz on May 25, 2012 at 9:14am 0 Comments 2 Likes
Dear Friends and Family of AVMSurvivors,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…
Continue
10 days post surgery for my brother
Posted by DsSis on May 25, 2012 at 12:37am 5 Comments 2 Likes
David's surgery was May 14th and today, May 24th, we had a series of wonderful things happen.
1) I finally got to see my brother walk (with the assistance of his wonderful physio) - he made two rounds of the hospital ward...I was the last…
"Executive Function Disorder"
Posted by Hiro on May 23, 2012 at 8:50pm 10 Comments 0 Likes
I had the neurologist appointment on Monday, and he diagnosed me with "Executive Dysfunction Syndrome" that he thinks stemmed from some sort of damage to my left frontal lobe during/after my surgery (that was where my 3 AVMs were), contributing…
ContinueEvents
-
Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
2 Comments 1 Like
© 2012 Created by BensFriends.org
