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AVM Survivors Network

New and afraid

Hello everyone! I am a new member to this site.
In April I was diagnosed with a right temporal lobe AVM when I had an MRI for a nasty 10 day headache. I have since had an angiogram to get a better look and decide on treatment. My AVM is about 5cm and has a large “feeder” vein. My nuerosurgeon believes gamma-knife is thr safest treatment and wants to schedule in the next few weeks. Everything is moving so quickly!
I am scared to death of getting the frame put on my head!
I have also had chronic Lymes Disease for almost 2 years. So any new or strange things happening to me are the norm. I have random pain and headaches most days.
Please tell me about your gamma-knife experiences.

Hi Jane, John here from north of you in Manitoba. I had gamma knife November 10th due to an AVM eft temporal discovered due to a bleed. I had to option, gamma and craniotomy however quite high risk with craniotomy so recommendation from surgeon was gamma and how d you argue with that! Gamma day was really great for me, some discomfort during attaching the frame but more pressure that pain. From there off to CT and then MRI and on to gamma for 24 minutes. I was home by 1:30 pm and back to work on the following Monday, the 10th was a Thursday. I was worried about the frame but for not really, I looked at it as a good thing! I was getting on with the treatment. The folks who do this are amazing, and I love the analogy someone used that gamma to these people is like putting stitches in a finger to most docs, they are just that good! I loved the photos my wife took of the frame attached, and a little on the funny side, on the way to the scans we had to travel a distance. Met quite a few people in the hallway who didn’t want to look at the guy in the wheel chair with the thing attached to his head, that of course being me. I would smile at them as they snuck a peak and say “G’day”. Most said “Oh Hi”, I found it quite entertaining! Any questions about it feel free, I’m 28 weeks out and go for an MRI November 18th.

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Love it! Love your positivity, too!

@jani23,

Welcome to the site. It is all a bit scary when you first get a diagnosis but I don’t think you should worry about the frame. I’ve no experience of gamma knife as my treatment was by embolisation but I have both treatments in the “relatively easy to get through” box.

Good luck. Ask around on the site. I hope others will give you their experiences and having the treatment move on promptly is a good thing.

Best wishes,

Richard

Thank you so much for your quick responses!
I am anxious to get this taken care of. Its hard when I have not had any real symptoms and now have to have this procedure. Kind of the “if its not broke don’t fix it” mentality!
I know its a good thing that it has been found before anything bad has happened. And of course I am now nervous that it will bleed just because I am aware that it exists!
I have been through soooo much pain and suffering with Lyme Disease that I should be able to take this in stride!
Any other information anyone has on ths gamma-knife procedure feel free to share with me! The good and the bad please!

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I’m going in for Radiation, “SRS”, pretty much the same thing with the head frame and all… the 13th of June. Plan on hearing from me shortly after that. I’ll let you know my experience☀️I kind of can’t wait for it to be done. It’s one more step in the recovery process…

-Lorna

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Lorna,

I will be waiting to hear about how your procedure went! Mine will be shortly after yours I think.

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I’ll be looking forward to hearing from you too😊
-Lorna

I had SRS this March after a spontaneous bleed in Nov '14 and a cerebral AVM diagnosis.
I have to be truthful and say it wasn’t the best experience, but it’s not that bad. I would definitely recomend asking for and taking some anti anxiety medication before and pain killers soon after.
The frame is not painful but it is annoying and you feel pressure.
If you have any specific questions please ask.

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Thank you for your information! I plan on taking as much meds as they will give to me!! I did not really care for the “coming down” from the Fentynal and Versed that I got for my angiogram!

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I agree! Perfectly good plan! If I’m honest, I had an angiogram last week and I’m in more pain from that than I remember from my embolization… except I stayed on the painkillers constantly post embo and haven’t taken much for the angio. It’s the bruising that’s giving me jip.

It’ll be fine. Welcome to the AVM survivors family!

Richard

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Hi Jani

I am in nearly the same position as you… i found out just after Christmas about my AVM, i had an angiogram in March and my neurosurgeon i saw about 3 weeks ago has put me in for a gamma knife and i should here about the appointment very soon.

It is very scary i know. But dont panic, read the posts on here listen to the advice these people have and you will calm down. You can be fixed the knife is the easiest way, if that doesn’t work for me ive been told they will try the gluing.

Keep your chin up and stay positive.

Matty

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Thanks Matty!

I worked innGamma Knife and honestly there is nothing to worry about. It can take a couple years to properly shrink though and will not happen straight away. But it will shrink it after gamma knife just takes time. Ironically I too was diagnosed with an AVM but mine is too dangerous for gamma knife so had surgery and that failed too. I was born with AVM and I am 55 now and mine was an incidental finding so I have learned to live with it and don’t let it bother me.
Good luck with the gamma knife and you will be fine

Hi Jane,

My name is Michael and in August 2016 I learned that I had an AVM near my brain stem. Due to the location I decided to have Gamma Knife surgery (after consulting with 8 different physicinns). I had it done at Cleveland Clinic in Ohio December 15th. It’s now been six months and I’ll have my first follow up MRI in two weeks. I was told there is a 70-80% chance that it will heal between 1-3 years. If not they will wait one more year and then try it again.

The fitting of the frame was not that bad. There was some pain right when they were doing it but then there was just pressure. I had it on for about 9 hours. When they removed the frame I had a bad bad headache for 2-3 hours but then I was fine. I did use yoga breathing to keep calm a lot of the day.

I was in the GK machine 85 minutes. When it was done I hopped off the table, they removed the frame, I went to dinner at a restaurant with my wife and flew to Utah the next morning. The back of my head still has indentations from the two pins but there is nothing that shows from the pins on my forehead. I imagine that is a result of laying on my back all day for the CT, MRI, angiogram, GK.

Take in long controlled breaths and you’ll be fine.

Thank you Michael!
I have my neuro consult on the 14th of this month at the U of M. They will schedule my procedure after that. I am still concerned about that darn head frame!! Also, been reading about hair loss, tiredness and nausea for a few weeks after. Did you experience any of this?

Hi Jani, don’t worry about the frame you don’t feel anything as they freeze the location where the frame is attached, it’s just a bit of pressure. The G.K is over so fast it is much easier process than having an MRI. You just relax and listen to your favourite music. They will let you know when they are moving your head but you won’t even notice that. I had embolizations and Gemma Knife, I would prefere GK anytime. Good luck with it, it’s eight years since I had GK done and I haven’t looked back since. Carmel

Thanks Carmel!
I am sure I will be ok. Its just the worry of the unknown! Did you have any side effects after the radiation? I would like to take a few weeks off of work after, even if I don’t need them! Just to relax after all of this stress!

Hi Jane, I had no side affects from the G.K. I had it done in Sheffield. Went in on a Friday evening had the procedure on Saturday, was let home on Sunday morning. Went shopping in M&S down the road from the hospital before flying back to Ireland. The hospital in Sheffield is an excellent place to have this procedure done. When I was over there in 2009 there were patients coming from all over Europe for this procedure.
Let me know how it goes with everything and feel free to contact me anytime if you have any questions.
Kind Regards Carmel

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Hi Jani,

I had an AVM rupture in '91 and a remnant was found in an inoperable part of my brain. I was fitted with a halo and treated with gamma knife. You will be numbed for the fitting and removal, so you should not feel a thing pain-wise.

Mine was shut down after 6 months, that was the best time frame back then - not sure what improvements they’ve made? I’m praying that your headaches subside after your AVM is taken care of.

My gamma knife is scheduled for July 12th. Things are getting real!