Godbless you matty. Im aaron btw. I was diagnose of right parietal avm last november 2016, im in saudi arabia working here as a respiratory therapist, unfortunately, and im not sure if there is gamma knife here in saudi arabia, i went to philippines for a vacation and visit one of the hospital in manila ( cardinal santos hospital) they did angiogram and one of my neuro told me that it can be done by gamma knife its a non invasive procedure and it sounds good btw.
. But the problem is that it cost too much, i dont have that money to spend so i came back to saudi to work again just too save money for my gamma knife. The doctor gave me a medicine called keppra and its doing fine for me it controls the seizures on my left side of the face. Im scheduled to go back home this december 2 and im planning to undergo gamma knife if its possible. I will pray for all of you guys who will undergo treatment. And pls pray for me also, im afraid for this, the only thing that keeps me strong is my 3yr old son and my wife. Thank you for listening this is my first time to post here and sorry for my english. Thank you Godbless you all.
Welcome to the site Aaron! I had gamma knife 11 months ago, and am awaiting follow up MRI in 5 weeks. I’m fortunate to have public health care here in Canada so was able to get it done. How long do you think it will take to save enough for the procedure? It was the best choice for me, a small avm but very deep, while surgery was an option the list of likely deficits was scary. Again, its great you’re here with us! Take Care, John.
Thank you for welcoming me on this site sir john. When ever i visit this site and read about the comments its a relief for me and it makes me strong enough to do the procedure all of the people here serves as an inspiration. We have save money but its not enough for the procedure but there is a charity in the philippines that help the unfortunate so i think in my case they will help. I hope. What was the feeling during ur gamma knife sir? Is it painful? How long it will take? Im glad you overcome all of this sir. God is good. Im very happy for you sir. Godbless you always.
Hi there Aaron,
Great to see a new face on the site, welcome. You will find much comfort here and lots of people happy to share their experiences.
I was diagnosed may 2017 and am also awaiting treatment, it is all very scary. I will have an angiogram in the next month or so and then following that I will have several embolisms until my AVM is small enough for gamma knife. I have talked to two neurosurgeon consultants here in the UK about gamma knife and they both said other than pain from the head frame holding head in place only during the procedure and potential headache following procedure - the actual treatment should not be painful during gamma knife. I beleive the procedure is about 1-2 hours. In terms of how long the gamma knife takes to eliminate the AVM - it can take up to 3 years. They may decide to have more than one session of gamma knife depending on success for your particular AVM. You will most likely have a yearly checkup to track progress. Everyone is differant, some people see significant change in only a year or so and others its more gradual.
Thinking of you and your family and sending all my wishes.
Corrine
Hi Aaron, I was diagnosed in May, and had the routine MRI, angiogram. Then I had the gamma knife 10days ago, like Corrine has said it’s not painful, more uncomfortable, I’ve got to have another session in 2weeks, hopefully the last one.
Stay strong, take care.
Sarah x
Thank you corrine. Ive read some comments here and yeah it will take about 2-3yrs to be completely removed avm. And after that necrosis comes right? I have only 46 days vacation and after that i will go back to saudi arabia. I have no choice but to work as soon as possible. Do you think thats possible for post gamma knife patient? Anyway goodluck on your treatment and dont worry God is there for you okay. You can do it. I will pray for you. Godbless
Thank you sarah, thank for telling me that its not painful haha. This site really helps alot. Especially you people. Godbless you and i will pray for your complete healing. Godbless you.
Hello! I’m very interested to learn about gamma knife treatment. I’m going to a new neurologist today and I’m really hoping that he will give me some options for treatment. The neurologist and neurosurgeon I’ve seen haven’t given me any treatment options. I didn’t know that there was treatment for AVM’s, I thought I just had to live with it. I’m anxious to learn about the pros and cons of treatments. I have an AVM right frontal lobe, hemorrhage April 2016. My life hasn’t been the same since and I’m really hoping that I can figure out what can be done and get some kind of help! Best wishes to you all!
Hi Kaiami, I’ve just read your all your post, and sounds like your having a very difficult time. I was diagnosed in May this year as I lost vision in my right eye, so had mri which found the avm and the early stage of multiple sclerosis.
Had the gamma knife (radio surgery) 10days ago and having the second treatment on the 24th October, which slowly shrinks the blood vessel, and yes I will be checked for the next 2/3 years. But as long as I’m still here I can cope with that. I have a beautiful young son who needs me, and he’s been struggling seeing me some days in so much pain, but now he’s getting better now iv had some treatment. All I say to him onwards and upwards, that we are on the road to recovery. My son is only 8 and loves Pokémon, so the easiest way to explain what’s going on and what a avm is, is a tangela ( google it )
I hope you got some answers today.
Take care, stay strong, you’ve got this far. You can carry on
Sending my love
Sarah xx
Hi Aaron,
There is a chance of necrosis(damage of healthy tissues) after gamma knife but according to my neurosurgeon, likelyhood is small. From what my neurosurgeon told me, most people only need up to couple weeks or so to recover from gamma knife. From reading on these forums I have read that it really does vary. Some people had few side effects (mainly some headaches couple days following treatment, soreness from head piece and nausea from medication) and are able to get back to work very soon, others are less forunate struggling with brain swelling and other side effects. Everyone responds differantly but hopeing you recover swiftly. Thankyou for your kind words, good luck with everything.
Best wishes,
Corrine
Hello Kuya Aron
We are neighbors as I work at a hospital in Abu Dhabi. I had Gamma Knife surgery 10 months ago, but in the USA. I was tired for a week or so but if I had to go to work, I would have been able to. I assume your Saudi insurance might not be worldwide so the system in the Philippines may be the best option.
My procedure was only 1 hour 25 min but I was at the hospital from 7am to 4 pm. They had to frirst do. an MRI, CT scan, and a cranial angiogram. I had a terrible headache when they took off the frame for an hour or so, but went to dinner with my wife and flew from Ohio to Salt Lake the next day. You should be ok.
Praying for you to know your next step.
Michael
Dear gents
I had treatment of my AVM and broken vein in my brain in 2016 at Prague hospital https://www.homolka.cz/en-CZ/departments/stereotactic-and-radioneurosurgery-osrn.html
Maybe it is worth to go for treatment to Prague and save money for gamma knife intervention.
They applied gamma knife after angiogram to my AVM malformation. Since then I was much more better. I have implemented Codman shunt but it seems after 3 years is out of operation so after next check up at Prague clinic I will get rid my shunt from my head. Who can advise if it is good idea? Shunt can be deactivated by gradual adjustment by magnetic field and I would be observed if no negative effect is not causing problems.
Any advice would be highly welcomed.
Kindest regards
Andy Slovakia
Hello kuya michael, if i had a chance to go there to abu dhabi i will visit you and talk to you about this avm, haha. Good to know that your okei sir. Yes the insurance here in saudi is not aplicable in the philippines. I hope after my treatment i would recover fast because i need to go to work for my family. Im scared really, ive read some topics about avm and it really does scary, some are being paralized , some will undergo embolization etc etc. im trying not to be stressed because it will give some negative effect on me , i have 45 days more hopefully i will arrive safe in the philippines. And im hoping it will not rupture. Did your neuro surgeon told you about necrosis after gamma knife? Does it happens to all avm patient? Thank you so much sir godbless you and your family.
Hi Aron
I had SRS (almost the same as gamma knife) for my left side AVM in 2015.
According to the neurosurgeon, having radiation necrosis is rare & it should happen between 6 months to 2 years.
Don’t worry too much. IS RARE 
Thank you sir desmonil. I just want to make sure, corrine also mention that the chances of necrosis is small. Thanks to all of you guys here in this site now im ready to undergo gamma knife without hesitation. You guys are my inspiration i will just update you after my gamma knife , anyway i still have 45 days. Godbless you all.
Hi Aron, sorry it’s taken me too long to reply. I understand you are
scared. I was too for a long time. I also got more scared sometimes
reading posts on AVM Survivors. Sometimes it is better to walk away. So
you’ll go back to the Philippines in 40 days? My surgeon did discuss
necrosis. He said the chance is very slight. That’s why they do a CT scan,
an MRI, a cranial angiogram and then they calibrate the Gamma Knife to do
the job. I had a 6 month follow up MRI in June and I’m looking forward to
the one year MRI in December. In June, the physician here said he could
see no necrosis. I did have a numb sensation on my scalp for several
months. It’s mostly gone but slightly there. My neck has also been sore
since December, like a pulled muscle. I don’t know if that’s a nerve
thing. The AVM is wrapped around my 5th nerve by the brain stem /
cerebellum. Good luck in your research, you fear control, and your prep to
go back home. Mike
Hi
And welcome, The Gamma knife is nothing to worry about I promise, just the cage is not comfy… I hope you get the money together soon and get it out of the way so you can concentrate on you little one and the wife… Its hard i know worrying about stuff.
My thoughts are with you.
Matty
My results for the game knife were similar to yours. It took a day to do the testing setup and gamma knife. The next day I got on a plane and flew back from Virginia to Illinois. Mine was in 1989 and that was the only place in the US doing gamma knife. I went to work the next week. A little slow, but not bad. It was much better than the crainiotomy.
Hi Aaron, I hope you doing good!!! Is almost Christmas and I hope you are doing great!!! Please let us know how you doing!!!
Hello there everyone. Sorry it took me so long to reply, for finally i had my gamma knife last december 7, it was a 6hrs procedure if im not mistaken that includes The attaching the frame in my head, MRI, angiogram and the gamma knife itself. Thank God i survived. After the procedure i dont onow what side effect would i expect but the only thing im not comfortable with is the numbness in my head, its been 6 days now. I just want to ask if what else should i expect after gamma knife? I will be ok right? Thank you for all your prayers. Please if you have time can you tell me what to do because im worried. But for now im doing fine.