Anyone had 4 gamma knives?

Hi everyone,

So I had an mri/mra a week ago. My seizure dr ordered to see why my seizures have started becoming more frequent. Anyway I received a call from them that there was NO CHANGE in my AVM since my last mri in August of 2015. I was heartbroken. Why? In October of this year it will be 3 yrs since my 3rd gamma knife. So it’s not looking positive for my avm to be gone this yr. It’s looking more likely of me having to have a 4th gamma knife. This is after 4 embolizations and 3 gamma knives all since 2007. When I started this journey I was 23 a month away from my 24 birthday, my son was 2 almost 3. As well as my husband and I where trying for a 2nd child for over a yr. Now here I am 9 yrs later my son is heading to the 7th grade in September no 2nd child, as we where told no pregnancy till the avm was gone. Plus I’m now 33 and my son is 12. My marriage has great days good days and bad days. All from how my new personality and outlook on life can be. But is there anyone who has had to go through 4 rounds of gamma knife? I had a hard time with the 2nd one. Did one accepting the 3rd and now I’m partially in denial of the possibility of a 4th, but also not waiting to accept needing another one. I’m devastated over this!!! HELP

Thank you
Andrea

Andrea, I can’t imagine what you’ve been through, you must have great strength and determination. Have you been treated by one group of docs, or have you received a 2nd opinion? What reasons have they given you for the need to repeat the process?

Don’t give up hope, Andrea. I’ll keep you in my thoughts and prayers.

Andrea,

I am sorry for all you've been through. No, I've never had a gamma knife, mine in inoperable, except possibly with the Cyber Knife. That opportunity is a whole other lifetime away, in the past.

I share your frustration and may I also say anger at times. I found out about my AVM in 1989, 27 years ago. They caught me before I had any children, so I have none. I'm now 49, single, no children and just lost my Mother who I cared for. I'm angry some days, but not as much as I used to be.

I know that snapshot of my life is nothing like yours except to say that none of us knows how our lives will work out. I learned a while back to accept life, if I wake up each day, on it's terms and be happy therein. Without God we are all lost. I hope you have Him in your life, He's the only one that knows where we're headed and how it's all going to work out for each of us.

I feel your pain and disappointment, may God keep you and hold you and yours,
Kim

I've had Gamma Knife 4 times: June 2011, December 2011, June 2012, and June 2014.

A month after my first GK, I had a craniotomy to clip 2 aneurysms. I'd MUCH rather have GK!!

I had my yearly MRI in March--hoping to say the AVM was gone. Nope. They told me it was still shrinking and to come back in a year for an angiogram--at which time they'd determine if it was gone, if there was enough scar tissue to keep it from rupturing, or if I needed another GK or crani.

What an amazing person you are. Being a mom and wife and 4 GK’s.
I had my bleed in April 2013. My GK was in September of 2013. I was very blessed the AVM went away but I have been left with major head pain. Any bending my head down increase’s my head pain. Never realized how much we bend ou heads down!
I hope and pray each day is better then the last for you!
Hugs and prayers,
Niyani

Hi andrea, sorry for the frustration.

Ive had 3 GKR, and apart from the drill and the injections, to be honest i didnt think it wasnt that bad. I was back to work in 2 days, and that was it.

They have told me that 10% can never be removed, and if they told me they now have the opportunity, i would jump to the chance of a fourth dose myself.

Better have the op....

I have had 2 different drs do my embolizations. The 2nd dr was for a 2nd opinion to see if I could finally do a crani, turns out I'm still considered inoperable and can only have gamma an embolzations done. The gamma kinves were all done by the same drs. I did however just have to my change avm dr, for reason not for my doing. I would love my old avm dr back so bad!!!

Yes mine was considered inoperable but thank god for gamma knife and embolzations! I don't have many anger days anymore. At the start I really did but I have certainly accepted that this is my life and good or bad days this is my life and hey I'm grateful to be here!! Thanks for the kind words!

Don't I know the feeling my first gamma there was no change in my avm, the 2nd gamma there was a small chane but not until the last 6 months in the 3rd yr. That's when they decided to do 2 more embolizations than my 3rd gamma. Now in Oct will be 3 yrs since my last gamma and there is no change. Maybe I'll get lucky and it will shrink by aug!

Yes I have daily headaches and some days the pain is horrible!!! Ha bending over is so annoying and always causes trouble. I cant wait till this bugger is gone lol.

I haven't been able to work for over 9 yrs. My headaches and seizures are ridiculous. Mine is so deep and huge its been a long hard road. As I'm sure yours was too. I have come this far no turning around or stopping now!