AVM Free after just 1 year post GK

As some of you know on Monday I went into the ER with really bad headaches that had been progressively getting worse over a week up to a pain scale 10 I was also throwing up. I have the pain and swelling under control with steroids and just had a angio which confirmed I'm now AVM free. Yay. Update since coming home I sent my records to The Gamma Team at USC for them to take a look for me. I got a call and they said there is a new cyst near the AMV site. 1.4mm. The Dr's at the ER did mention something about a cyst but it didn't seem to be concern so I kind of forgot about it. However now learning that cysts are a rare but possible side effect after SRS I have something more to worry about. I'm waiting for the doctors to get back to me with a detailed report and their recommendation what to do if anything about it.

Tags: AVM, Free, Gamma, knife

Views: 475

▶ Reply to This

Replies to This Discussion

Permalink Reply by Brett D on October 8, 2011 at 3:02pm
Update,

Went to my NS yesterday for a followup. It went pretty well. Doc ordered a new MRI to see if the steroids are doing the job and the swelling is not coming back as I taper off them. I'm down to 1 mg for the last week, I started on 6mg 3 weeks ago. He said not to worry about the cyst as it may get smaller as the swelling goes down but he said he will keep an eye on it with MRI's so we will see probably late next week.
Permalink Reply by Michele_A on October 8, 2011 at 3:58pm
Hey Brett...glad that you don't have to worry about the cyst right now...hopefully the MRIs will show the cyst getting smaller and smaller :)))!!!
Permalink Reply by amber trammell on October 26, 2011 at 1:36pm
that is so awesome .congrats!!! what is srs?
Permalink Reply by Brett D on October 26, 2011 at 3:04pm
Hi Amber,

Thank You. Stereotactic radiosurgery (SRS)Gamma-Knife Cyber-Knife etc..

RSS

Follow AVMSurvivors and Ben's Friends

Follow Me on Pinterest

To Support AVMSurvivors.org, Click an Ad. Or Two.

Advertise With Us

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

Loading…
  • Add Photos
  • View All

Blog Posts

Counting Down The Days...

Posted by Sam on May 27, 2012 at 3:30pm 0 Comments

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…

Continue

What up with my ear???

Posted by kristi on May 26, 2012 at 3:17pm 3 Comments

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…

Continue

MRI or angio?

Posted by stephanie on May 26, 2012 at 1:24pm 4 Comments

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

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

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

Moderator

May 2012 AVMSurvivors Community Newsletter

Posted by Ben Munoz on May 25, 2012 at 9:14am 0 Comments

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

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…

Continue

"Executive Function Disorder"

Posted by Hiro on May 23, 2012 at 8:50pm 10 Comments

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…

Continue

Events

© 2012   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service