Hi, all it’s been awhile, been busy with consults. Finally found someone who will treat my inoperable AVM. Dr. D. Lunsford in Pittsburgh feels I have 80% chance I’d ridding lesion. Having surgery Jan 22. Excited but very nervous and scared. Hoping someone will have advice on side effects, recovery, pain? Hoping for a new year filled with treatment possibilities for all who suffer with AVM!
You’ve got a good doc, Lisa. He’s well respected in the AVM world. I wish you all the best on the 22nd…
I've had Gamma Knife 4 times. For me, the worst part is the removal of the halo. It is mostly just a really boring day.
I'm usually tired for a few days afterwards. Sometimes it triggers a migraine within a few days of treatment. I've lost hair 2 of the 4 times. Overall, though, MUCH easier than a craniotomy. (I had a craniotomy to clip 2 aneurysms 4 weeks after my first GK).
Lisa, Let your dentist know about this as radiation is hard on your teeth! Best to you!
My suggestion is to just go with the flow, I took painkillers after the frame was out…its not so much pain but discomfort for me.
Headaches, hair loss…afterwards I suffered with edema which got treated with steroids, but GK worked for me and I’m cured now…good luck and keep us posted.
You are in great hands, he did my Gamma Knife in 2011 and we have seen continued progress with it shrinking! My side effects were fatigue and some head pain after a month I felt like my old self. The best of luck to you!
Thank you Gerry, is your AVM gone? Did you have any side effects you can share with me? I am very anxious about having the frame put on. Did you have any negative symptoms before your diagnosis?
Thank you ky, how big was your AVM and how many treatments did you have? Did you lose all your hair right away? I am a bit anxious about all of it.
No significant hair loss, just a small patch on the front but they all appeared again after a few weeks.
I was very anxious as well abt the frame fitting but it happened so quickly that I didn’t hv time to react…the only time I felt pain was when they were injecting local anesthesia …and that’s all, all procedure was painless apart from angio… and when the frame was taken out, a little discomfort and they offered me painkillers which I gladly accepted…I was put on steroids previous night so I couldn’t really sleep properly but overall I thought I was worrying for nothing…
I am lucky that AVM is obliterated in one treatment, it was in left frontal lobe.
Hope it helps, I also had a small photo of my daughter in my hand to give that extra strength when I was going through all of it.
Good luck Lisa, keep us informed.
Thank you ky, it is so helpful to talk with other on this website, helps me relax a bit. My AVM is also in posterior left frontal and parietal lobe, about 3.5 cm. I am very happy for you that yours is gone!
Hi Lisa, I just joined this sight and looking through some experiences of the other members. I head gamma knife radition on june 10 2015. I am one of those people that if the worst happens, I will experienced it. The Gamma Knife procedure itself wasnt too bad. Afterwards I felt fine. There was some confusion between the doc and the nurse. I should have been a steriod after to keep from swelling and they did not give it to be. As I awoke in the morning. I experienced the WORST pain in my head. It wasnt a headache but pain and swelling in my face and head. I was for sure somthing had gone wrong. So I went to the er, the doctor gave me a steriod and 15 minutes the pain went away. However, while at the er, I saw my face in the mirror and my face was double its size from the trearment. It was very scary. It did go away. 2 weeks later, here came the hair loss. Left a bald spot on the site. It did grow. Now…the worst part are the headaches. I experienced the worst headaches to where i was in bed for 2 months untill the doctor finally perscribe a percocent. After gamma knife ,I now experience numbness in my right and left body, that I feel is permanent. It has been 7 months. I urge you know be aware of the side effects. The doctors make it like this is a easy producure with low side effects. They say, things like this MIGHT happen. I am begining to feel a bit better. I still have headaches on the left side. My neuro says it could be nerve damage from radition. I am very tired most of the time. God bless and be well.
Kristy
Hi Kristy, sounds as if you had a rough time with gamma. Are you able to possibly follow with a new neurologist to be re-evaluated? They say that a lot of these post gamma symptoms will eventually go away, I sincerely hope that for you. How big is your AVM and did they suggest follow up treatments?
I had GK in November last year in the UK. Side effects since then has been aversion to bright lights when driving at night (this comes and goes), regular headaches and increase in frequency of migraines, hair loss within one month of treatment (patch at back of my head where AVM is, roughly 6cm x 4cm) and is starting to grow back now slowly. I work in an office so have to take regular breaks away from my screen. I have been prescribed beta blockers as a preventative for the migraines, feeding back to doctors about these next week. Appetite affected some days. I just see it as my body's way of getting rid of the bad things and making way for my new life without the avm. Let me know if you ever need anything. I've found this site so helpful
Hi hanc189, thank you for your feedback. You seem to have a very positive outlook. My Gamma is on Friday and I am very anxious about the frame fitting, and I certainly don’t want another cerebral angiogram, but I will try to be positive. I have been living with this for 53 years so I just need to tell myself that any of side effects are worth it to try to get rid of this thing. You are a very brave young woman and I wish you all the best. Please keep in touch!
I hope all goes well. I'm 11 years out from having Gamma Knife.