Would anyone kind enough to post their successful obliterate about brain AVM by Radio surgery?
Also please post the date of the procedure & when it obliterated.
I believe it will be a boost to those who are waiting for recovery person like me :)
I don't have an "obliteration" story for you - yet - but I wanted to give you some encouragement. My daughter has an AVM on her brainstem. She underwent Gamma Knife surgery on Oct 25, 2013. At the one year mark it had shrunk to about 1/2 to 1/3 of its original size. She has an MRI scheduled for May 1st and they are feeling fairly confident (and we are trying to not get to excited) that it could be obliterated by then. Hopefully I can reply with those wonderful results. Everyone's AVM is different. Different sizes and locations. Sometimes different treatments. And different recoveries. I hope that you have a speedy recovery!
OK - I had to leave college early because....
BUT, thanx to the Medical professional(s) - NONE of whom wanted to have his / her / their patient "go south" on them, and, then of course my family at the time really supported my return to so-called normalcy.
Oh, to this day I have MINOR issues - for example, I cannot drink alcohol ( BIG BLOODY DEAL !!!!! )
BUT, I recently retired from one industry after 30 years or so and have been working in another (sports-related don't you know !!! ) for now 10 years !!! Your daughter shall be fine and with all the new medical advances - may just live to BE 8,000 years old !!!
( Provided she does as she is told and does not try to cram "everything" in to "tomorrow" !!!! ) eProvide
Hi Desmonil, I posted the following in the Radiosurgery sub-group over a year ago and you may find it encouraging.
Good news to share for other Radiosurgery Patients
Posted by Susan T. on March 12, 2014 at 4:18pm in Radiosurgery Patients (Gamma Knife/other)Back to Radiosurgery Patients (Gamma Knife/other) Discussions
Hi, I posted my great news on the Main Discussions page and maybe someone else in this group will benefit by my posting here. Yesterday, I went to my current neurologist's office to review last Thursday's MRI/MRA. The scans were done to look at my 2nd AVM which received radiation last July. Per the new scans, my 2nd AVM is gone and it has only been 9 months since my radiosurgery! The news was so unexpected that I started to cry and realized later that the emotional response shows more healing. I pray everyone in this group receives great news too.
I am writing on behalf of my boyfriend who just had treatment last week. He had 3 treatments in 3 days that lasted about 30 min or so. He did not feel anything and is on a steroid med. Steroids are preventative for swelling of the brain that can cause other symptoms which he is not having as of today. We will not know until at least 6 months if the treatment was successful but we have confidence and a great medical team at Christiana Radiation Center in Delaware. I will post more on my blog as the time goes by if you want to follow me. Good luck and God Bless you in your recovery!
After 2 seperate treatments in 1999 &2002 i finally received a letter from my consultant to tell me my avm was obliterated around 2004ish memory isnt what it was and dates might be a bit out but it worked and its 36 years since my bleed now.
that's good to hear Harley! Joe already has memory loss from a brain injury he had back in the early 80's. I can't believe that they didn't see the AVM back then. He suffered a stroke this past October 2014 in which they did see the AVM. The stroke was ischemic a non bleed so he was lucky in a sense. He lost minimum speech and some memory. They are hopeful that some of the speech may improve. We need to get him speech therapy next. Thanks for sharing your story!
Desmonil, My radiation was done in May 2007 and 2 years later in August 2009, I had an angiogram and was told I was AVM Free.
Stay Strong & Positive!
I had my bleed in 1989. I had gamma knife radio surgery in 1990 and again in 1993. After the first gamma knife I had no side effects at all. Having the head frame on was by far the worst part of the procedure. Since the first gamma knife did not completely obliterate the AVM I had the surgery again three years later. Unfortunately I started having vision and nerve pain issues about 5 months later. I still have double vision and nerve pain in my left leg but I lead a perfectly normal life. Here I am 26 years after the bleed and I’m doing great.
My surgeries were at the Mayo Clinic. This kind of surgery is literally lifesaving. We are lucky to live at a time when we have this kind of treatment available.
I haven’t had my surgery yet, its on the 28th. I will continue to post my progress.
Tks for the story. Yes all of us are diff. Please update us the result in May. God bless your daughter
To the rest bro/sis
Thank you so much for your replied with great encouragement. I'm trying to stay positive & strong.
Hoping my avm will be gone by 1 years (like Susan T).
Please carry on any successful stories, i believed lots of people like me wish to read about it.
I am hoping for something good also. I had my radio surgery Jan 27th 2014 and I will not know anything at all until a year from now. In my mind I did what I could have done and there is nothing I can do but enjoy life and wait. To this day I felt no different than before except that I still do not have hair on the ride side of my head. Very good encouraging news are those from Susan T. If we could all be that lucky but who knows.
I’m sorry but I don’t have good news so if you don’t want to hear about it, I won’t post, but if you do, let me know and I will tell you my story. Sound like a deal? Good luck to you all and I hope all goes well for you.
Hope all goes well worth your surgery. I had a crainiotomy and I am 8 weeks post op. I am cured!!! The hardest part of recovery is not the physical pain but of the emotional and mental toll it takes on you.
Stay positive and know that you are not alone. You will find comfort here.
I also from the previous message don't have a successful 'obliteration' story, but it was close, I had an AVM in my cerebellum, I had radiosurgery and it didn't obliterate the AVM but it did shrink to a much smaller size, I hope this does bring comfort to you.
Also, as my AVM was in my cerebellum that made it very difficult for surgeons to reach so you may be lucky, good luck
I don't have an obliteration story but it was close, I had an AVM in my cerebellum, it didn't remove it all but it did shrink size a lot
Good Morning I also have AVM deep in cerebellum going for radiation treatment May 7 please let me know what side effects you have had, I am scared and used to be healthy. This hit me hard and glad there is this site to connect with, no one seems to understand what I am feeling. Headaches are better with Gabapentin 600 mg three times a day. My balance is still a little off but the headaches are most completely gone. Any information is appreciated. Thank you
I have an AVM on the right parietal. I had radiation on Jan 27th 2015. I did not have any symptoms before or after the treatment. The only thing that I had around 10-15 days after the treatment lost some hair on the right side the size of an egg. The hair started growing finally now. Other the that I would have never known that I had the treatment. I have to go for a followup MRI and angiogram next year.
What great news to have your AVM gone in 9 months. Happy to hear good news.
Happy to see posts by AVM survivors that are AVM free gives me so much hope. Thank you for letting us know your experience.