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AVM Survivors Network

Gamma Knife

Was Gamma Knife successful for anyone with a large AVM?
mine is large and located near the brainstem and I want to see if it was a success for anyone with similar case.

thanks

Hi Ahmad, I did a search for you and had a look at some of the results, You can read them here :

http://www.avmsurvivors.org/main/search/search?q=gamma+knife

Hope this helps.

Martin.

Hello Ahmad,

I don't know if you mean your AVM is above or below the brain stem. My AVM is below the brain stem entangled in the spinal cord substance. For my AVM the Gamma Knife is not precise enough and could damage the spinal cord tissue. I would suggest looking into the Cyber Knife. It is a very precise upgrade of the Gamma Knife. It uses technologies from the auto industry and NASA to be able to precisely target even moving lesions, such as say something on the lung or heart.

Kim

It’s been a year since mine, I’m not sure if mine was large but it was pretty catastrophic. I’m 25 and have made some pretty good improvements and my doctor said my scans show less blood moving through the AVM, it is located near my brainstem as well.

Thanks

Thanks Kim, I already had Gamma Knife 5 months ago and I was wondering if it did workout for anyone in here! thank you for your support.

Glad to hear it is showing some progress for you and encouraging for me as well.
I hope you get better and better and get back to normal.thanks

Hi Ahmed. I'm afraid I can't answer this as my AVM is untreated. However I have always been told that because my AVM (located in the cerebellum)is large it is unsuitable for treatment. The only hospital here that offers Gamma Knife won't even attempt it unless I have multiple embolisations first. I would be very interested to know if your GK is successful please.

Hi Lulu, I will keep you posted of how things go for me. keep me in your prayers!
I did get hydrocephalus and have a shunt in place just like you!

Thanks Ahmad. Does that mean you don't get hydrocephalus any more please? And if so is that a result of the GK?

cheers
Lulu

I still have hydrocephalus and i have a VP-shunt as a permanent solution.
GK doesn't have anything to do with hydrocephalus, there is no cure for hydrocephalus.

Thanks Ahmad. That is as I suspected.

Cheers
Lulu

Hi Ahmad,

So how do you feel after the treatment? Do you see any changes? My son will go for a Radiosurgery maybe this September/October. Owh by the way, does your AVM affected your hands/leg etc?

My son had AVM at his left side of his brain but just a small one 2.4x3.4x3.4mm. It was affected his right side (hand and leg). Now the hand in OK but the nerves in his feet still have not recovered yet. Now he is still going for a physio treatment every week.

14-IMG_9749.JPG (38.9 KB)

RMA
please check with his doctor
see if he can take coconut oil, b12 and b1
There are different types of b12 and you want to make sure if he can take it get a blood test 1st to see his levels
b12 is needed to coat our nerves and once its gone its gone
b1 used to be giving by foot drs in the 40s etc and it does help as well
My foot dr says our b12 should be on the higher spectrum like 900
http://www.livestrong.com/article/373112-what-are-the-different-types-of-b12/

Check out the book Coconut Cures

Angela

Hi RMA,
well i'm good, had a follow up mri two months ago and brain tissues are not harmed thank god but no changes on the avm it self. as for my hands and legs they are fine and I have almost full function however i developed hydrocephalus and have a shunt going from my head to my belly to drain CSF fluid.
all the best to you and your son. stay strong it is going to be okay :)small avms have really high obliteration percentage!

Hi there.

Try not too lose hope Ahmad as sometimes it takes a while for AVM changes to become apparent after GK. I suffer from recurrent hydrocephalus and have a shunt too. But mine was caused by having an AVM itself because the mass blocks the normal CSF escape route. Occasionally my shunt blocks again and I have to have it replaced which is a pain.

Hi Lulu, thanks for your supportive comment! I developed hydrocephalus from a bleed last year, i'm currently in good health and the shunt is working well!
how many reviews did u have??it makes me a bit worried to think about a revision as my plate is already full with the treatment of avm!

HI Ahmad. Sorry, I didn't mean to worry you. But when I got Hydrocephalus for the first time they didn't tell me it could ever happen again. I was really shocked when it did 4 years later. I am now on my 4th revision. Generally I think the shunts are designed to last between 4 and 7 years - although it might be dependent on what caused the condition so this is just for me. However I have had my current Shunt for 9 years now and no probs yet (fingers crossed).

Hi Lulu,
As per what i read, shunts last longer in adults. so I hope we both won't need a revision soon! fingers crossed.
All the best.

And to you.

Cheers
Lulu