Vertigo / Headaches after Cyberknife

Symptoms & Treatment Cyber Knife Radiation
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Hi everyone,

This is my first post here! So please give it a lot of love :heavy_heart_exclamation:

My name is Pia (37). I’m originally from Ecuador but have been living and working in Munich, Germany, since 2017.

I was diagnosed with cerebral AVM last year on September 24th, following a routine cMRT scan due to experiencing strong headaches and visual distortions for more than a year. My AVM is medium-sized and located on the left side of my brain, between the cerebellum and brainstem. Because of the number of aneurysms, including some dangerously positioned on a main artery, I was only offered two treatment options: embolization or CyberKnife.

A month after my diagnosis, I underwent CyberKnife radiosurgery here in Munich. I experienced the typical radiation “hangover,” my symptoms were mostly limited to fatigue, occasional headaches and light dizziness.

However, two months later, I began feeling worse than before treatment. Shortly after Christmas, I suffered of severe vertigo that lasted two weeks. The dizziness was so intense that I couldn’t walk or even hold a conversation. After several tests, doctors found that part of my brain had been slightly affected by the radiation. Not a critical damage but still there was something that was “kissed” by it.

Now, after two weeks and about 10 days of cortisone treatment, the dizziness has slightly improved, but I still experience persistent headaches that often develop into migraines.

I’m starting to feel the real weight of this struggle since my diagnosis—not just physically but also mentally.

Before my diagnosis, I was very active. I used to work out 4-5 times a week, sing as the lead in a band go out every weekend. I was also a bit of a workaholic haha. Now, I barely recognize myself. I’ve had to stop doing so much because the dizziness and headaches make it impossible most of the time. Or I just don’t have the energy to do it.

Has anyone else experienced or is currently experiencing similar symptoms?
Headaches? Vertigo?.. Our even Sadness! :broken_heart:

… If you got this far… Thanks for reading!

Lots of love!
Pia

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Hey Pia,
My name is Merl. I’m a member of the Modsupport Team here on Ben’s Friends. Although my situation is not AVM related it is neurological and it’s all been operated on a few times. Each time the medicos have gone in, coming out the other side (recovery) has been more and more difficult. Despite all of the assurances I’ve recieved my recoveries have been anything but easy. I was told the normal 6-8week recovery and from all reports I was expecting a straight line of progression, getting better and better. I got to 6-8 months and I was still on a seesaw of symptoms.

What I can say is that ‘hangover’ is normal and as for those dizziess, that’s become a daily thing. Only this morning we got an early morning phone call and jumped up to get it. I was like a pinball stumbling up the hall way, bouncing from wall to wall. I got to the phone and as I stopped moving all of that blood rushed to my head and BOOM BOOM BOOM the blood was pulsing in my head. I start seeing stars and I quickly grab a seat before I fall over. I’m almost 12years of from my last neurosurgery and I still have to manage it all today.

It’s my understanding that with cyberknife it can take some time before the full effect is known because, let’s face it, they fried something within your skull. Recovery from anything neurological/neurosurgical takes time. Some things will improve, I think somethings we learn to manage better with and some things we learn to adjust to. For me I’ve found the fatigue to be chronic. Some days I’m OK and then some days I’m lucky to even crawl out of bed, absolutely zapped. If I can find a cause ie bad sleep, missed a meal, forgot medications etc I can somewhat accept it, but when I can’t find a cause, the frustration annoys the daylights out of me.

Ohh, and that ‘workaholic’, yea that was me too. In my former life I used to teach people with disabilities and now to be the one with the disability… …Ohh hell NO!!! I didn’t want to accept that, so I did the worse thing possible, I pushed myself to recover quicker (DON’T DO THAT!!!). I pushed too hard, too soon, doing myself a greater injury, requiring further brain surgery, which has REALLY screwed me up. The medicos now tell me it’s highly unlikely I’ll ever be able to return to my former role. Even here today, I kick myself every day for that ie What if I’d not pushed myself? What if I’d listened to my body, screaming at me to stop? What if…? What if…? What if…? And the psychological impact has been HUGE. And that sadness is real. It’s a form of grief. I want the old “Me” back, but that’s long gone now, and I still miss that life today.

I needed to see a psychologist to help work through it all. She helped me to accept (well, somewhat accept) that none of this was a matter of choice and how to better manage around ‘Me’ on a daily basis.

My advice: Start slow. Learn your body’s signs. Learn your ‘new’ limits
Listen to your body. It will tell you when you’ve reached your limits, but you have to listen. I didn’t, don’t do that. Those signs maybe subtle, so listen carefully. When your body says ‘Stop’, you STOP.

As I’ve said to others, ‘…recovery is a marathon, not a sprint. You can sprint the first mile, then have nothing left for the next 100mile. Slowly, slowly and some days that’s s.l.o.w.l.y. and that’s OK too. Learn how to manage ‘You’. Other’s may have expectations. This ain’t about them, this is about You.’

None of this is easy, we know this because we live it too, so, come talk to us.

Merl from the Modsupport Team

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Hi Merl,

Thank you so much for taking the time to write back to me!

You’ve mentioned so many important things that deeply resonate with my heart and soul right now. Your advice is exactly what I needed to hear!
T H A N K S

I guess, in summary: I need to be patient with myself.

And I guess that’s the hardest part—or where I see myself struggling the most.

A part of me tells me that I’m fine, that it’s not that big of a deal… that what I’ve been through isn’t that bad, that it was “just” a radiosurgery, and that I should just keep going with my life as always, without overthinking things. And in some ways, that’s correct.

But I think I really need to reconsider this approach. I need to show myself more compassion, empathy, and kindness—toward both myself and this illness.

I have to remind myself that I am in a recovery phase, and recovery doesn’t happen overnight…!

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Yeah, and it’s not a straight line.

When to get suspicious / look for help v when to take it as a reasonable oddity that will pass is hard. You obviously have to err on the side of getting checked out but some of the oddities will just be the non-linear progression.

I guess my main add is you’re not alone. It is hard, so don’t be hard on yourself about it being difficult.

Hang in there!

Richard

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Hi Pia, and welcome. Merl covered a lot and is a wealth of knowledge! I found out about my AVM when it bleed, I ended up having gamma knife, which is very similar to cyber knife. It is not unusual to experience some effects a few month later, generally about the 6 month mark. I had some effects and what we refer to as ice pick headaches around the time, I was able to manage using only anti inflammatory and did not require steroids. I did have some head aches and "weird feelings that would come and go and slowly disappeared. This went on for several months. For me it was not too bad, but was certainly noticeable.

Mine bleed in may of 2016, and I had to get back into activity very slowly, and did so with my Dr. approval. I now try to balance sleep, diet and exercise in a healthy way. Sometimes I do well, sometimes not! It is a marathon for sure! Take Care, John.

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And when you learn how to do that, can you please tell me how. :smile:
For my former clients I could have the patience of a saint, but for self, nil. I wanted to be right and I wanted it right bloody NOW!!! Hence me pushing myself. My wife could see I was driving myself into the ground and frying myself in the process and one day she simply told me “Stop”. I’d convinced myself I was building stamina by pushing, but standing on the outside, she could see the result. Upon a LOT of self introspection (and a bit of honesty) I could see it myself, even if I didn’t want to admit it.

Now is a time to be kind to yourself, no matter how odd that seems. Take the time your body needs and not just the time your mind thinks it needs. I had a life I’d worked damn hard to achieve and I wanted it back. For me that was a very bitter pill to swallow when I finally accepted I couldn’t do it anymore. As I’ve said to others, “I fought against it, but in the end I was only fighting with myself. Bit silly really…”

Now, please, don’t get me wrong, I’m not happy about it all, but the reality is I have no choice. I need to move forward for my own sanity (or what’s left of it :smile: ).

P.S. The slower you take that recovery the better the longer term outcome. Going 2 steps forward but 3 steps back gets you nowhere, fast.

Merl from the Modsupport Team

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Hi everyone, these gamma knife side effects like the headaches people report, do people tend to find they resolve eventually?

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Mine became less and less and have now been absent for several years. It was a matter of months they occurred and then frequency decreased until totally gone. Always remember thought hat while we share a lot of similarities, we are all different and there doesn’t seem to be any hard, fast rules with these things. One of the points that makes us all so special! John.

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Hey Pia!
My AVM is also located in the cerebellum and I had cyber knife treatment in December 2023.
Mine bled first and I had the treatment afterwards.
I had similar experience with you but the difference was that I couldn’t tell if it was the bleed or radiation.
As months went by I was experiencing different sensations like in 5-6 month mark I was having headaches and pressure to my left eye but with time it stopped.
It’s normal to feel this way,your life changed suddenly but keep in mind it’s for your own good,and health is everything! Best wishes
Despina

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Hi Pia,
Sorry to read of your situation - the frustration is understandable and try not to be too hard on yourself, life can be very tough and unfair.
Can certainly relate to how life suddenly switches from full on to “what happened, who am I and how did I get here?”
I have been lucky with my Cyberknife, so far, and hope that you recover quickly.
The good news is that you are young, have been very fit previously, and whilst the recovery may take some time, it could give you time to listen to and appreciate more music - small wins are important!
Good luck,
Dan

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