Has anyone treated Cyberknife at Stanford by Dr Chang? I kept on asking him the side effects post CK he keeps on telling us chances are better than no treatment - totally agree 1000%. I want to be pro active and manage post ck treatment side effects of my daughter. Who will be the specialist post treatment - I guess it’s her Neurologist. Any suggestions ? Her avm is posterior frontal avm and right occipital. Who are the specialists you’ve seen post CK treatment ?
1 Like
Hi! I had CN in Greece (after 5 embolizations). My AVM is in the left occipital lobe. The CN was made by a radiation oncologist. It was her that answered all my questions regarding side effects after cyberknife, not my neurologist. I had minor side effects, nothing serious. I wish all the best to your daughter.
Thank you for your response. We need hope right now.
After a visit with one of the neurosurgeons, I asked questions and he was so dismissive—I cried after.
We’ve been told our daughter’s motor function and vision may worsen. Her memory and speech could decline too. I can’t even think about seizures. Most nights, she asks me to hold her and shares her fears. It breaks me.
I would then anticipate she will need more therapies and specialists after the cyberknife. I am hoping and praying mild side effects like yours 
1 Like
I just had CN 2 weeks ago. My radiologist oncologist is the one doing the follow up. Scheduled for a mri in 6 months.
Side effects have been minimal, head aches and tired but getting less so each day.
1 Like
Thank you for your response Teddy. She has some CN side effects and I am hoping it gets better soon
2 Likes
It seems the brain swelling and side effects (SE) comes more worse at 6 months after Cyberknife. Anyone had SE after 6 months?
I’d say pretty much everyone who’s had radiotherapy tbh. The main question really is the degree.
That’s what I am wondering at what degree and how long did it go away. Anything that helps with the swelling including steroids?
Steroids are often used to treat swelling. I can’t remember if you’re asking in anticipation of radiotherapy or you’re post op but if you’re post op and having any difficulty, go and talk to your neuro team. It is pretty common but usually well managed, by my reading of stories posted by others.
Yes of course I talked to my Cyberknife neuro team and SE varies. I would like to know the personal experiences of others. At the e same time thankful if SE is not that significant
1 Like
It can be significant but I’m convinced there are more people here who’ve got through fine than those who’ve had a hard time of it.
It would be great if some folks can share their experience of radiotherapy.
Hi! I had gamma knife in 2016, and did have some side effects ie//swelling, around the 6 month mark and what some “ice pick” headaches. I did not need steroids and managed with some over the counter meds, Advil and Tylenol. this was really pretty short lived and I only needed to take meds on a few days. Otherwise it was more like a pressure headache, not painful but a bit of a nuisance.
The Ice pick headaches started suddenly and they are a sharp pain that is really short lived. The first time it happened was frightening as I immediately thought bleed. This happened several times a day for a few days, and then tapered off. I would estimate over the course of a month or so from start to finish. Then really the time without this occurring was months and then a distant memory.
I was really focused on staying active, eating well and trying to get the required sleep. I think these are critical in recovery and to the extent possible really important and helped me immensely. Take Care, John.
I’ve found that while neurosurgeons often give broad answers like “it depends on the person,” it can be hard when you’re looking for something more specific or reassuring. In our support group, your lived experiences and others responses offer direction and a sense of hope that medical statements often can’t provide. I’m hoping my daughter’s side effects will be temporary. Some stories here are scary, yes, but there’s real strength in the way we stand by one another, offering courage, perspective, and a reminder that we’re not alone in this fight.
3 Likes
My neurosurgeon told me he felt that I had about a 90% chance of obliteration within three years with one treatment. He anticipated minimal lasting side effects if any. I took the 90% as as close to certainty as he would ever go given the uncertainties of these wonderful things we call brains!
We have a great group here, you are not in this fight alone, we are all here to support you, your daughter and each other! John.
1 Like