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AVM Survivors Network

Looking for Success Stories after Gamma Knife!


#1

Hi everyone,

We are in discussions with our 7 year old son's medical team regarding how to treat his residual AVM, and Gamma Knife has been presented as an option. Long story short, he had a major bleed 18 months ago which required an emergency craniotomy to remove the blood clot (cause of bleeding unknown), then 8 months later during an angiogram it was discovered that he had an AVM. He underwent a second craniotomy in December to remove the AVM, and we just found out that there continues to be a small but residual AVM in his brain. Treatment options include a third craniotomy, or Gamma Knife. The AVM is 2mm by 3mm and located in the right parietal lobe.

I have been doing a lot of reading and research about Gamma Knife, and from the forum here it appears that MOST people who choose gamma knife get some kind of edema followed by radiation necrosis. In fact, I don't know that I've come across a case yet where someone was successfully treated by gamma knife without those complications.

So, I'm on the hunt for GOOD NEWS stories - from those whose AVM was successfully obliterated by gamma knife, and who did not experience edema and radiation necrosis.

Thanking you in advance for any good news stories you can send our way.

:)


#2

There are many successful stories, in fact many who are don’t stick around to tell us about it. I’m sure there are other ways to find them, but try the following link to check out some of the stories: http://www.avmsurvivors.org/profiles/members/search?name=&country=&location=&q20_start_month=0&q20_start_day=0&q20_start_year=&q20_end_month=0&q20_end_day=0&q20_end_year=&q31=Obliterated&q32_3=Gamma-Knife&q36_start_month=0&q36_start_day=0&q36_start_year=&q36_end_month=0&q36_end_day=0&q36_end_year=&q33=&q34=&q35=


#3

I had gammaknife almost one month ago. Was tired for two weeks, otherwise fine. Don’t know anything about future results or potential edemas of course, but doctor told me that only 10% get edema after gammaknife, and only 5% notice them! Good luck with you decision :slight_smile:


#4

My AVM isn't completely obliterated yet. I've had 4 rounds of Gamma Knife to shrink a large AVM in my right parietal lobe. I had GK in June 2011, December 2011, June 2012, and June 2013.

I just went for an MRI & checkup 2 weeks ago. The AVM is still shrinking. The MRI did show some edema, but not enough to present symptoms. Allergies and weather systems are causing me more problems this summer than the AVM.


#5

Hi Heartlightgirl - I had GammaKnife September of 2008. I never had the edema. I was tired for about two to three weeks, and had to get around by a cane before I regained the strength to walk on my own about three weeks after my procedure.

Honestly, the only thing scary thing that had taken place was the Gran Mal Seizure I had seven months after my procedure. I've met other members who did not experience seizures after GammaKnife.

Part of me feels like it's my fault that I had not asked for anti-seizure medications upon being discharged (because I had a prescription of Percasets for pain when I left), but then again, how could I know considering that I knew nothing of AVM's or what to expect after having brain surgery?

Good luck in making the decision, and good luck to you and your son in this journey.


#6

Hi again, I looked quite a lot around the internet about the statistics for edema after gamnaknife, but could not find anything, so I was positively surprised by what the doctor said. But you may want to check with your doctors as well, as this was my only source of information. Regarding long term effects in terms of trating a 7 year old with gamnaknife, it is probably worth looking into a bit more. I read some were that gammaknife initiates i process, that continues after the avm is gone as well. According to what I read they don’t really know what continues to happen, but I did not get the impression that this necessarily had negative implications. I asked my doctor about this, and she said that it is true, and that for the same reasons edemas can occur as much as 10 years after the treatment, though that is very rare. She told me that they have been treating with gammaknife here (Norway) for about 30 years, and that is the timespan they hav overview over when it comes to negative long term effects. Which was fine with me, as I am 41. But you son has many more years than me to go :slight_smile: Also my doc said that theoretically gammaknife should increase cancer risk, but they have not been able to see that it actually does so in reality (this is again refering to Norway and the patients they have treated). Good luck! It is a tough decision.


#7

I had a crainiotomy in March of 1989. They got about 80 to 90% of the AVM. We had to wait awhile as my wife gave birth to my daughter in July. It was good to have such a happy thing that year. Then, in October I went to have the gamma knife. It worked well for me. Within two years, the AVM disappearred. There was not of that funny edema stuff that happened.


#8

Hey There...My son had his first GK 9 yrs. ago and it was very successful! In fact for 9 yrs. we all believed he was going to be just fine and live a wonderful life...the only reason we had to go thru another bleed was because my son had been kicked in the head and a rupture began. So whose to say if we could of gone on for the rest of his life with just one GK. The first one he was back to school in a month after his GK and not much else to say. He had a migraine from time to time.After the second rupture my son had GK #2.This time hair loss was noticed.We are 6 months post GK and he now has severe migraines that create pressure on his vision(being his in the left occipital. Other than that not much to report on the GK.For us the alternative for not having it since it is the only option besides not having it, is we are doing this. For us it may give us more time together and postpone having a bleed that may have horrible consequences.That is just our solution and works for us.We are hoping as the last time it will shrink it enough that he can have the whole ball of mess taken out, once and for all.It has been so long that medicine has made some advances that are now possible as a chance he will be able to have surgery, that they can confidently say they can do this.So bottom line GK is giving us hope. hugs, ;)


#9

The Gamma knife is typically only used for AVMs located close to the skull I believe. If I remember correctly, while it is a non-invasive approach, it might damage healthy brain tissue in its path and was not an option for my AVM. A vascular neurosurgeon might be able to do something less invasive like embolization? I recently had a 18mm ICA aneurysm repaired in a non-invasive way by a vascular neurosurgeon with amazing results. My heart is with you. Best of luck!


#10

http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/disorders/avm-page


#11

Actually for us Jacob's is not close to the skull the reason for his GK is because his is not possible to operate..operation is not an option.His is near and deep to the brain stem.His outcome is death, blindness, or retardation if operating occurs. They were able to embolize 75% which contained a aneurysm and the other 25% was given GK...first time it was all hit with GK. Thank You for your thoughts and best regards to you as well.


#12

Thanks for that info. very enlightening. Going to copy that and take to my doctor and ask questions...Thank You.


#13

Your son’s AVM sounds similar to mine. They could only do about 80%, but the last bit was huggging the stem. So, a couple months later, I got the Gamma Knife. It worked pretty good for me. All that stuff was 29 years ago. I know because my wife gave birth to my daughter between the craniotomy and the gamma knife. Of course each one is different, but I hope his is as successful as mine has been.


#14

I had my gamma knife done in Virginia in August 1989. This machine was only 6 months old. Back then, it was a new procedure available in only one spot in the US. Thank you grass roots for putting this link so I could find this stuff and remember these things.


#15

Hi all,

I unfortunately rarely check this site much anymore but this post caught my attention while I was on it for the first time in a while. I had 2 Gamma knife treatments after an embolization. These were all after a brain hemorrhage caused by the AVM. The aforementioned treatments plus some additional years of waiting allowed for a craniotomy to remove the AVM to be possible 10yrs after the hemorrhage. 17 years after the hemorrhage I live a normal life AVM-free.

I am happy to share more details or provide advice and guidance.

Feel free to reach out directly.

Drew


#16

Just a quick hi Drew, I’ve been a couple years now and don’t think we crossed paths. I had a hemorrhage back in May 2016 and gamma knife November 2016. Still in the waiting process. Thanks for posting and offering others to reach out to you. I read your profile, the time frame and treatment is amazing. Great to hear all is well, take care, John.