1st Cyberknife Procedure Completed!

Well, this morning I went into Boston Medical Center to have my first Cyberknife procedure for my brain AVM. Everything went smoothly and the doctors were pleased. I was told my avm was near 4 centimeters, so they treated half of it lengthwise today and will take care of the other 50% within three to six months. All in all I’m feeling ok. If you look at some of the informational videos, they say patients can return to normal activity upon completion. I think this varies by patient. If I HAD to go back to work at a office or so, I would have been able to, but at FAR less functional capacity.

I do feel as though my brain has been zapped and the inside of my head feels warmer than usual. I have done a lot of thinking about this and have even questioned whether its psychological or enhanced by the fact that its currently 89 degrees here today in Boston; but I do know my head feels warmer then it usually does. I am fatigued but I also think that has a lot to do with my overall emotional state leading up to this procedure. I didn't get much sleep the last couple days and the staff remarked that I looked VERY anxious as I was being fitted. I personally wasn't too nervous, but definitely anxious for this as its almost been five months to the day since my initial bleed and this is the first time I got treated.

For anyone else going through this procedure, I would recommend you learn yourself very well and if you are the type who will be very emotional, or uneasy, then prepare to be more exhausted then most report...and this would just be due to the physical and emotional weariness leading up to the procedure. (Not saying I was overly emotional or anything, but if I got this worn out just from worrying a little bit...others who handle things worse will have a rougher time)

The mask is kinda cool. Its fits snug but isn't too tight and conforms to your face. MUCH better then the big metal frames that get screwed into your head and leave scars. If any of you have access to this form of treatment, I would HIGHLY recommend it. It has sub-millimeter accuracy and adjusts to your body movement. One time toward the end I was getting really antsy and felt like I might cough. I know my head moved slightly (about half and inch) and I heard the machine automatically shut down to avoid hitting the wrong areas. After a few seconds it started back up again. They also had me strapped in on the bed/table but it still allowed for a small amount of arm movement. I, of course, was awake for the entire treatment although I could have gone to sleep but found the whole thing to nerve wracking to be able to sleep through. I did open my eyes quite a bit and this wasn't much of a problem either. The procedure itself lasted 56 minutes, with the entire morning (consult with oncologist, prep in the Cyberknife room, follow-up meeting afterwards) going from 9:00 am to around noon.

I will continue to update this blog with my symptoms and how I am dealing with them in hopes of helping others who are awaiting this procedure feel more at ease with knowing (generally) how to prepare. I found that I was rather nervous ahead of time but was unable to find too many people who could speak to their experiences and offer advice. (Thanks to Jessica, Andrea, Gordon and Alan for your replies)

To everyone who sent a message or comment wishing me well, thanks again! With this first treatment completed, its now on to the next phase of this very long journey...the waiting up to two years to see if it was effective or not. If anyone else has advice or recommendations they can offer me in this next step, I would greatly welcome those! Thanks!

God Bless you all and I'm so grateful for such an awesome support community and to know we are all in this together, one day at a time!


Hi Keith,

I didn’t have Cyberknife, but I had something similar, Gammaknife.

I’m not sure about Cyberknife, but I believe you will be tired with GK no matter what you do before you have it. I was not tired at first, but after a few days, oh my goodness, I was exhausted.
The tiredness eventually went away. I think I was not tired at first because they give a little steroid along with GK. I was exhausted about a week after the procedure and the exhaustion lasted for about two weeks. Since I’ve had GK, I don’t feel real well on cloudy days.
Whatever the challenges, I’m glad to be here :slight_smile:


Oh, I think the mask would have been worst for me, I have claustrophobia.
My scares from the frame were not visible because my hairline is close to my eyebrows.

Thats amazing procedure…By the way I’m schedule for Gamma knife. or Cyberknife My md has not decided but he did mentioned that i’m gonna need radiation…Waiting for the day…Congratulations thank you for sharing your Journey…Good luck and God bless…

Thanks Ameenah for your response! I believe you are probably correct with the fatigue as what you said seems to be the general consensus as I’ve looked through many people’s stories. I am waiting to see when the fatigue will hit, if at all. Its only 24 hours afterwards and despite the continued trouble sleeping, I still feel “normal” at least in the way things have been for me since the initial bleed. I agree with you though each day is just a privilege to be alive!

Anabel, thanks also for your response. The whole procedure is pretty amazing. Keep me updated on what you get scheduled for and if I can help with any questions!

Hi Keith, I think the tiredness has something to do with the strength of radiation as well.
I was in the Gk machine for 37 minutes and the strength was 21gy.

Peace and Blessings

I should look into that. I’m starting to feel more drained then usual today although I’m not quite ready to say that is due to the radiation. I was in for 56 minutes but I should check the strength of the radiation. I know mine was a normal to high dosage.

Ok, here is the update. It has now been 5 days since the procedure and I have since traveled halfway across the country to spend rest and relaxation time with family for a couple weeks. The day of travel went well, a little fatigue but nothing different then my “new normal” has been. Starting Sunday evening I started to not feel to well. Yesterday morning I woke up with a bad headache and would get dizzy whenever I tried to walk. My head feels as though someone took a bunch of coins, put them in a plastic bag and dropped them inside of my head. Its an overall heaviness feeling. After speaking this morning with my oncologist, they feel I may be experiencing some form of brain swelling from the radiation, so I am going back on the steroids. (I stopped taking them as directed three days after the cyberknife procedure.) Hopefully this does the trick!

Hello Keith, My daughter had LINAC radiosurgery last May and experienced that feeling off and on for the past year. They also diagnosed her with swelling and she was on and off of steriods several times over this past year. Just keep track of your symptoms in a journal so as things change if they do…you remember to tell your docs. Have a nice visit with your family!

Hi Kim. Thanks for the recommendation. I will start keeping track of these feelings and so from there. Now that I’m back on the steroids the symptoms have eased up a bit. Hopefully this isn’t a long-term solution. (steroids that is)

Usually steroids are not for ever.

My head feels tight, the only way that I can explain it, but the docs say they still do not see any swelling. My head feels most weird right before and during cloudy days. My head tightness might be from nerve damage prior to GK, I had a stroke and got nerve damage from the embolization. I wouldn’t really say I got it from the embolization, the doctor spilled glue in two of my brain arteries during the embolization, I was told that by the avm surgeon at the University Of Penn, where I had the embolization. They were supposed to schedule surgery, but I told them, “NO THANKS” and I went to Jefferson and got GK.

I hope you feel better.

Peace and Blessings,

Well here is another update, approximately two weeks or so after my Cyberknife procedure.

I remain on steroids for the swelling, but am hoping to be able to reach my oncologist soon and begin to ween myself off of them with no increased swelling. I have small headaches on a daily basis, barely noticeable but controllable with Tylenol. The worse part has been trouble sleeping and this has continued for about the last week or so. I either cannot fall asleep, or cannot stay asleep and that has been very troubling. I don’t know if this is emotional, physical, a combination of the two or something else but it has been wearing me down. Has anyone else had issues like this after radiation?

Hello Keith,

Jaclyn had sleep issues while on steriods. It’s most likely the steriods vs the radiation. The steriods can really mess with you emotionally and physically. Hopefully you can be weened off of them soon …:slight_smile:

I haven’t met a person yet that has been on steroids and could sleep.

One of the side effects of steroids is you can not sleep.

It happens to everyone that I know who have been on steroids.

Hopefully you will be off them soon.
Steroids put weight on you too. It doesn’t matter what you eat, steroids put extra water on your body. f you don’t overeat too much the weight will come off when you get off the steroids.


Thanks SO much for your responses! This has put me at ease already. I’ve been going crazy trying to figure out what’s going on and now it all makes sense. I’m hoping I can get off of the steroids soon! Also, I have been concerned about gaining a bit of weight after I’ve loss some, but once again…I guess I should have expected this with the steroids. :-/ Oh well…guess this long journey continues!

Your welcome Keith.

I know it is hard, but try and relax. When you can’t sleep watch a funny movie, I mean one that really makes you laugh.


Hey Keith,
How are things going? Have you been able to find a bit more peace when falling asleep? Just a suggestion but someone on here told me that I should start keeping a journal with the dates of when I feel certain things and a description of the feelings. It’s just an extra step so that certain things or feelings aren’t left out when you finally meet with your doc especially now since it’s after the radiation treatment. I started mine on the 22nd of April and intend to keep doing it til my appointment on the 7th. Good luck and I pray things continue to go well and improve for you.

Just another update in hopes of being an encouragement to someone else who may be going through this procedure soon. It has now been 22 days since my cyberknife procedure. Yesterday I had a follow-up appointment with my oncologist after having a bit of brain swelling. Four days ago they reduced my steroid intake to 2 mg a day from 4 since I was having problems sleeping. Yesterday I was informed I could stop taking them! I’m excited because maybe now I’ll get more consistent sleep and also my appetite might go down. :slight_smile: I’ve put on about seven pounds since I’ve been on the steroids which hasn’t been fun but I guess that is part of the side effects. Overall, I’m feeling pretty good and haven’t experienced any fatigue that I think is due to the radiation. I’m not out of the woods yet as I hear some people don’t experience fatigue until a month or more afterwards, but I’ll take each day as it comes and make the best of it!

Yeah !!! I’m glad you feel better.

An update about five months after the first treatment. I am doing well and have been able to do more and more activities as of late which has been great, however my moments of exhaustion have been unpredictable. Its almost like chasing a moving target each day. I am preparing to have my second and hopefully final cyberknife treatment sometime towards the end of this month. My doctors wanted me to be symptom free before they proceeded (which I wasn’t) but after a note from my neurologist showing a good EEG test result and his approval, the decided to move forward. Hoping for the best!