I would like info on who has had repeat gamma knife and how long did you wait after the 1st treatment?  the Dr. gave a 90% obliteration rate over 3 yrs.  Well, it's been 3 yrs and although it's much much smaller, it's not gone.  Do we wait a 4th year or treat it again?  Am worried about radiation necrosis.  Please share your story!  thanks.

Tags: Gamma, knife, necrosis, radiation, radiosurgery

Views: 34

Reply to This

Replies to This Discussion

I would like to know what you decided to do about your worries? I am only 2 years out, and I am going to have my angio in a couple of months. Of course, I am a worrier and would like to know.

Thanks!

I have had 2 gamma knife surgeries. The first was following a bleed in 2000 in which the doctors found the initial AVM. The next time was in 2003 when the doctors treated a stray AVM. This was prior to it bleeding and the AVM was said to be obliterated. I was scheduled for a 3rd AVM surgery in 2010 to target one remaining AVM when it rupture February 15th, 2010. I don't know what the risk is, but I would recommend getting the treatment sooner than later. Doctors do not know well enough how soon the AVMs will rupture. That's just my 2 cents. Blessings as you continue on!
Hi Sandie I had my 1st GK in June 2007 and then in November 2010 after waiting an additional 6 months we opted to go for another treatment. We (i) could have waited another yr but, a lot of things played a role in my decision. My age for one 28, I wanted this to be done with by my 30th birthday seems how it all started when I was 23. Plus we have one son that is soon to turn 7 and we want more kids. So waiting that extra yr to pray it worked was to much for me. I hated having the GK done the 1 st time so I was mad and upset over doing it again, but I want this AVM gone!!!! Tired of waiting around for it to go away. I say just go for it it will relieve some of the stress of waiting and some fresh radition is good lol. It was a hard choice but I'm tired of this AVM controlling my life. Hope you guys are able to make a decision. Without to much stress of the "what ifs"............. Andrea
Hi. We are almost 3 years post Gamma as well and I personally, want to wait the full 4 years before my son has his angiogram. I just do not see a point in doing it now when we know that it takes up to 4 years for full treatment results.  Just my personal opinion, though. 
Thank you all for your input. I have something that has started playing a bigger role than I thought it was, (I thought it would go away) I have started having left field blindness. Did anyone experience this?
@Kimberly, I had a similar sensation with my right eye. Right after surgery and for about 10 months I would periodically go completely blind in both eyes. After speaking with my neurosurgeon, neurologist, and finally a psychologist, they determined it was stress related and not as a result of the surgery. Now its 14 months after surgery and I only go blind every once in a while and it only lasts a few minutes. You might want to look at speaking with a pscyhologist to determine if the blindness is a result of the surgery or physical stress related to surgical recovery.

RSS

Follow AVMSurvivors and Ben's Friends

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

Advertise With Us

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

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

© 2012   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service