We are AVM survivors, here for your support.
Angio and EEG
Dr. Waldron performed Merlin's angiogram on January 19th. It looks like there haven't been any bleeds, and maybe only one tiny aneurysm. The pictures were a bit scary, even though the news was (relatively) good and what we expected to hear. It looked like someone had spilled ink in a big puddle in the middle of the left side of her brain. This view made the damage look more extensive than it had in the MRI.
We went to see Dr. Kerr (a pediatric neurologist at Dell Children's) to get an EEG and try to determine whether her "episodes" (numbness on the right side of her body and headache) were seizures. The EEG looked perfectly normal, but a normal read couldn't rule out the possibility of seizures, so he prescribed Topamax since it is known to treat both seizures and migraines.
We are gathering medical records and images to send to Dr. Lawton and Dr Gupta at UCSF. (We were referred to McDermott, but he doesn't treat children. Dr. Gupta is their pediatric gamma person, although they will all sit in on the pre-conference and discuss potential courses of action.) It's been a little frustrating getting the appointment set up - Dr Waldron sent over the films and gave me the phone numbers to call, and it seemed like it was going to be pretty straightforward, but when I called, they were in a tizzy about her being 13, and they wanted ALL her records, and they sounded skeptical about our insurance. So, I'm working on all those things.
In the meantime, we are adjusting, and Merlin seems to be doing well.
Comment
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
My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
Continue
I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
Continue Away for 5 weeks
Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
Continue
the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Starting to understand everything...
Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
Continue
Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
Continue
Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
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
You need to be a member of AVMSurvivors.org to add comments!
Join AVMSurvivors.org