My DAVF is left side of my head, TERRIBLE headaches everyday, loud wooshing noise in my left ear.The doc says the treatment will cause an area of hair loss, has anyone experienced hair loss from SRS, did it grow back?
Mark, I never experienced radiation; however, I have witnessed others whom have gone through radiation. It is my understanding (from people’s experiences) that once the radiation is over, the hair does grow back. As far as during the AVM treatment period, I would assume it would grow back in between treatments; however, I whole-heartedly apologize for not being able to give you a concrete/definite answer on the timeline. I am sure others whose experienced SRS will advice you on the timeline. Hope you are doing well!!! 
Thank you, I am determined to do well, not going to let this monster beat me!
Hello Mark, I didn't have GK but had a crainiotomy and coma for a couple of weeks. Apparently this is why I had hair loss. It happened a few months after surgery/coma, mainly on the surgery site. I then had my hair cut super short and it grew back quite quickly and now have even thicker hair than before!
All the best Mark and 'Beat the Beast'. My thoughts and prayers are with you. Lesley.
Hi Mark I have had Gamma knife twice, in both treatments I lost hair in the area of the AVM. My hair grows fast so it came in quickly. Also with being a woman and have longer hair no one could see the bald spot unless i out my hair up. If you do lose some it will come back just like a babies hair so soft Good luck with your gamma!!!
Thanks Andrea, that's helps me allot, really a little scared about the procedure.....going ot beat this thing!!
Our doctors told us very low risk of hair loss....not. Personally I think most people have hair loss. My son lost a patch above his AVM. It happened about a month after his Gamma treatment. One day he said his scalp was really sore and tender and literally that day we could pull his hair out in sections. Eventually it all fell out in that one patch. It started to grow back after about a month. My son also has 2 small patches of baldness where the screws were put in. It shows for him because he usually wears a brush cut but not a big deal.
Good luck with your treatment, Mark. It is a very long tough day -emotionally and physically. I hope you are taking some good support people with you. That is SO important. And give yourself time to rest afterwards. My son slept for a few days after and then felt tired for the next month. If you have any more questions, just ask. My thoughts are with you.
Hi, my little boy had the radiosurgery in October last year and the doctors talked both Ethan and myself through the side effects. Hair loss was one of them. Ethan hasn’t lost any hair and so far apart from a bit of short term memory loss he seems fine.
Hi again, also just to add I know everyone’ss different but Ethan was up and about 4 hours after the GK Treatment, demanding subway for his tea. It is very scary I know but it’s been six months since Ethans GK and all is well. He’s at School all the time, he goes to his swimming lessons, plays Golf and does everything else that Children of his age do. I’d stock up on the ice cream though, Ethan eats lots of Ice cream I think it cools his head down.
Good luck, Mark! You're 'determined' attitude will get you though this. :)
Hi Mark,
My DAVF was on the right side of the head, near my ear. I so understand the wooshing - had it for 8 years, no one could figure out why and was told to live with it. Wasn't until I started having episodes of the whole left side of the body going numb, did they do a MRI. They found what they thought was an AVM but after an angiogram, was found to be a DAVF. One year ago today, I had an embolization/radiation treatment. They got 80% and did radiation on the remaining. I did experience quite a bit of hair loss, but just in that immediate area, not all over. Luckily I have lots of hair and could hide it.... It all grew back quickly.
Good luck! Getting rid of the wooshing noise and headaches is so worth the tempory hair loss!
I just had my GAMMA knife treatment 9 days ago for my left-side DAVF, it will take some time for results, I know that, but I am really positive its going to work. I was really surprised by how much my face has swollen since the GK, I did not recognize myself in the mirror, that was a little scarey, no one told me that may happen, so was a real shocker. So, I am just curious now…how long did it take for your hair to start falling out? 2 weeks, 3 weeks, a month? Did it fall out all at once or a little at a time, just want to be prepared.
Hi Mark,
It took about 2 weeks before it started to fall out, slow at first and then larger clumps. Lasted about 2 weeks. Sorry about your face swelling, didn't have that but we are all different...
Is the noise gone? That was a wonderful feeling! I remember the noise being so loud I sometimes thought I would go crazy! I used to try to make the rhythm of it into a lullaby so I could go to sleep :-)
Best wishes on a speedy recovery!
Swelling is starting to reduce, still have the swooshing noise but the headaches seem to have diminished some, the Docs told me not to expect permanent continous results for at least 6 months. I have been taking sleeping meds at bedtime, helps to get a good night sleep. Thanks for the info on the hair, it’s not info the medical team shares, they are very talented people with a high level of expertisie but they are the worst communicators!, so thanks again for the info, now I know what to expect.