I have yet to have my gamma knife but in less than a month I am going in for my procedure. I am super nervous about this and really don’t know what effects may come from this. I’ve been told by my doctor it is normal for me to experience head aches, and if brain swelling occurs in my situation I may experience numbness on my right side (my face, arms, legs, etc), problems with balance, depth perception( balance and depth which I already have issues with now) and I may have double vision again. Because of my first bleed a year and almost a month ago I have issues with seeing out of my right eye, so it’s a not disabling but head aches are the worst! Varying greatly with the weather and if I over exert myself ill pay for it later that day…
For anyone who has had Gamma Knife, what are some side effects I am sure to expect? Has anyone lost hair from this procedure?
I know every AVM is different and effects vary but I feel like talking to others with similar experiences helps greatly!
Thank you so much!!!
Hi there My 15 year old daughter had gamma knife in March this year. Like yourself we were all dreading it and wondering what the side effects would be. I have to say "touch wood" that is hasn't been as bad as we thought. The only side effect she has had was two weeks after the procedure she started to become very dizzy and actually blacked out on one occasion. The radiologist who carried out the gammas knife seemed to think that it was due to slight swelling around the area and said it should resolve itself after a week or so. Which it did. I have to say, like yourself she suffered from very bad headaches (even a year after her bleed) but since the gamma knife they don't seem to be as bad. She hasn't lost any hair as yet but maybe that is because it is too early. She also had double vision after her bleed last year but hasn't had it since. Keep positive and strong I know it is hard but try not to worry yourself about it so much. Any more questions you have please feel free to ask,
Thank you so much for your reply Lisa. It isn’t often to find someone with a situation similar to yours but I am glad that everything is going well with yor daughters treatment and I do hope that she continues on that steady path to recovery:) I hope my procedure goes just as well; hearing stories such as your daughters makes it much easier to stay strong and positive. Loosing hair my doctor told me is very unlikely, so if she hasn’t by this point she most likely won’t
I wish her all the best! And thank you again
You are so welcome, I can really appreciate just how you are feeling right now. Please keep in touch and let me know how it goes. Wishing you all the best. Lisa.
I've had GK 3 times for an unruptured AVM and a crani to clip 2 unruptured aneurysms. About 3 months after the first GK/2 months after the crani, my migraines changed--they weren't bad, just moved a bit and I had a LOT of aura, but not always the headache. Shortly after that, I lost some of my hair. No real issues after GK #2. After GK #3, I had migraines for over a week. Then, I lost hair in the same spot as before. 2 months afterwards, the migraines were pretty bad again for a couple of weeks. It has been 11 months since my 3rd GK, and I'm doing well. My migraines are less frequent & less intense. I haven't had to take any sick days for migraines this school year! I go for my followup next month after school is out for summer. (I'm a 9th grade Special Education English teacher.)
Hi Vscato... my brother had a brain bleed last June due to an AVM close to his brain stem. It left him him with double vision, ringing in his ears and a cold sensation on the right side of his face and arm. He just had Gamma Knife treatment about 3 weeks ago. A few days after the treatment his face swelled up and it looked like he had been in a boxing match. He told me his head was really sore for a while. It hurt just to wash his hair, but other than that, I haven't heard him complain of any other side effects. He was told that he may experience some hair loss and additional side effects, but that hasn't happened so far. If you have any specific questions, I'll be happy to ask him and get back to you. Wishing you the best! Stay positive!
HI VSCATO! I HAD GAMMA KNIFE IN JANUARY OF THIS YEAR. I NOT HAVE A BLEED AND MY AVM WAS DISCOVERED BY AN MRI LOOKING FOR REASONS FOR DIZZINESS. THEY SAID MY AVM IS NOT THE CAUSE IRONICALLY. ANYWAY,MY SURGERY WENT WELL AND I DIDN'T EXPERIENCE ANY BAD SIDE EFFECTS. THE WORST THING FOR ME WAS THE ANTI-SEIZURE MEDICINE THEY PUT ME ON AS A PRECAUTION. I ONLY TOOK IT TWICE AND STOPPED BECAUSE IT MADE ME EXTREMELY DIZZY AND TIRED. I DID HAVE NUMBNESS ON MY HEAD FOR MONTHS AFTERWARDS AND I DID LOSE A LITTLE BIT OF HAIR WHERE THEY DID THE SURGERY BUT IT WASN'T NOTICEABLE AT ALL (I HAVE VERY THICK HAIR)I CAN FEEL WHERE THEY DID THE SURGERY BUT IT'S NOT PAINFUL. IT'S MORE LIKE SINUS PRESSURE FOR LACK OF A BETTER WAY TO DESCRIBE IT.THE THING THAT CONCERNS ME NOW IS THAT THERE WAS AN ARTICLE IN OUR LOCAL NEWSPAPER ABOUT LEAVING UNRUPTERED AVM'S ALONE VS. TREATING THEM. SUPPOSEDLY TREATING THEM LEAVES ME W/ A HIGHER RISK OF STROKE. I HAD DISCUSSED THIS BEFORE MY SURGERY W/ ONE OF THE NEUROSURGEONS AND WAS ADVISED TO HAVE THE SURGERY EVEN THOUGH I HAD NO SYMPTOMS AND HAVE LIVED W/ THE AVM FOR 47YRS. ANYWAY, IT REALLY WASN'T BAD FOR FOR AT ALL.I PUT MY FAITH IN GOD AND LEFT IT IN HIS HANDS.ASKING OTHERS TO PRAY HELPED TOO! I HOPE THIS IS SOMEWHAT REASSURING FOR YOU. I'VE SAID A PRAYER FOR YOU!
My Son had his AVM bleed he was in hospital for 3 months relearn everything from eating walking just daily stuff that people take for granted. He suffered a severe brain injury due to the bleeding that was only discovered the day of the bleeding. He was really a normal very athletic kid play a lot of sports. He is recoveing really well playing sports but he had dificulty seeing in his right side and some minor weakness on other side of his body. What i can say is if your AVM is operable and its better to get it done as soon as possible talk to your neuro surgeon if what are the benefits of Avm surgery removal vs. Gamma radiation treatment for your AVM. All the best for you!
Vsxato, I guess since no one replied you had your GK treatment already. How did you do? My wife had her GK two years ago and three months after she started to receive numbness and tingling in her right arm and face.A year later developed an edema in her brain and steroids were used twice in treatments. Still left about 50% . So I took her to hyperbaric oxygen treatment in hopes to get better.She is taking Keppra, Vimpat, and Onfi but still get tingling in her right hand.
What are you taking and does it help?
Hope everything went well.
