What was your brain swelling symptoms after radiation?

Hi there,
I had GK about 11 months ago. For the last week I have had a consistent headache every day. Not real bad, but bad enough to force me to take it easy. This also happened about a month ago but it went away after a few days or so and then I was doing real well, pretty much symptom free. I'm pointing my finger at the Radiation doing it's job and possibly some edema or swelling going on causing headaches but I have't had any checkups since my 6 month MRI that has confirmed any swelling etc.

When I get these headaches the following symptoms accompany it:

  • Foggy light headed feeling, slightly worse blurry vision.
  • Tinnitus is louder (ringing in ears)
  • Whooshing sound of blood-flow while in bed.
  • Head hurts when cough or sneeze.

My question is for those of you that have had radiation treatment for your AVM and was told you had brain swelling or edema, (1) what were your symptoms and how severe were they? (2) at what stage during treatment did they occur? (3) how long did they last? (4) did you take steroids to control it?

Just curious to know..

Hi Brett, I had CyberKnife back in June and they put me on steroids for 4 days following my treatment to mitigate brain swelling. I havn’t experienced any swelling thus far, that I know of anyways :slight_smile: but my doctors did tell me that if I get a headache that won’t go away to call them and they would put me back on the steroids. I was also told that swelling can occur 6 months to 1 year following the radiation treatment and just to watch for the symptons and notify them if this should occur. Every now and again, I also get some of the ringing in the ears and at times, my head does feel a burning sensation, however, this is not something that I feel constantly and also look at this as the Radiation doing its job :)). You might also want to join the sub group on the forum called “Radiosurgery (GammaKnife/Other)” to hear about other people’s experience with radiation treatment.
http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

Know that you are healing and that all this will pass with time :)))

/Michele

I would get that checked out because if it is brain swelling that can cause all kinds of problems if prolonged. Swelling can actually kill brain cells and cause damage because your brain dosent have alot of extra room in there to expand. I’m sure its nothing major with you because you sound like your functioning ok but pain is the bodys way of telling you somethings not quite right so, just for safety I’d talk to your doctor about it. Good luck and hope everythings just fine.

Thanks Michele, NBuddle,
I’m not concerned about it as I am functioning just fine. Yesterday and today the headaches seem to be decreasing slowly. Kind of similar to how they ended last time. I will post in the Radio surgery group to see what they have to say…
Thanks

Hi Brett. My son had brain swelling after Gamma. His symptoms started 11 months after his treatment. He had 2 episodes (focal seizures) where his leg went paralysed from the knee down and had the typical seizure spasms/twitching. Then the next episode, it started in the leg and travelled up his body and turned into a total body seizure but he stayed awake for it but couldn’t move or speak. (yes, he said it was horrible)
Our surgeon said he wanted to avoid steroids if at all possible because he said it would cause osteoporosis in his hips so my son’s seizure medication was increased and another medication added and he had another MRI 4months later which showed the brain swelling had increased and then the doctors thought it would start to decrease, which is did. He did not have another focal seizure and an MRI after a year, showed that the swelling was almost gone. He started his first year of university and managed to complete it successfully while dealing with this brain swelling altho it was hard and he was very tired (and couldn’t drink!)
He also did acupuncture treatments which I’m convinced helped his brain swelling .

I think this is a really critical time for you to watch your symptoms and have yourself checked if you think that things are “different” or if you have any weakness in your limbs. Focal seizures can present in many different ways so be aware.
Let us know how you are feeling as the weeks go on.

Hi Joy, Thank you for replying. How is your son doing these days? any closer to obliteration, shrinkage?
When your son had swelling did he experience headaches? head pressure feelings?.. That’s what I’m experiencing along with aching neck mussels etc.

Yes, if my symptoms are due to AVM destruction bring it on? :slight_smile:

Why can I not join this Radiosurgery group? When I click on the link, it says private.

@Brandi22

Hi! I’m afraid this conversation is at least 10 years old and the site has moved around a bit in the meanwhile. Tell us what your interest is and I’ll try to find some folk to help you.

Best wishes,

Richard

Oh, gotcha! I had seen that link in several posts and never could access! I have brain swelling 18 months after Radiosurgery, so just browsing for posts on that!

Thank you!
Brandi

What I’ve done in the current system is to gather the various treatment methods under the Symptoms and Treatment category. In there you’ll find a Gamma Knife section.

I populated it at least a couple of years ago, so I probably need to do another pass through the site to collect the more randomly distributed gamma knife stories together again.

I’d say beware stories that are very old. The system changed in summer 2016 and you’ll find people still here are most often those that joined after 2016 because some of the longer-standing members (such as yourself) found it a bit of a step to get used to the new layout.

Start a new topic in the Gamma Knife section, maybe, or have a read around for people in the same circumstances as you. You can also use the grey :mag_right: icon towards the top of the page to look for stories that contain certain phrases (but again beware of really old stories earlier than 2016).

Hope we can help.

Best wishes,

Richard