Gamma Knife Day Coming Close - Thoughts, Advice?

Symptoms & Treatment
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Hi Folks!

My boyfriend’s Gamma Knife surgery day is getting close - Aug 28th, 2024. He’s being treated by Dr. Michael Schwartz at Toronto General Hospital with their brand-new Gamma machine.
We’re both terrified, hopeful and mostly just trying not to think about the surgery and post-surgery too much.

My main concern is that we haven’t been able to yet place him with a therapist (thanks, Canadian healthcare system). He’s had bad seizures, and he gets very, very depressed and suicidal immediately after (and for a couple of days after). One of the side effects we’ve been told is an increase in seizures post-surgery.

I’ve written down some questions we want to ask once again on the 21st. Could you lovely people help me figure out if there’s something I’m missing? I would also love your advice on how to best support him, how to make this journey easier for him. His parents will be there with us, and they will be at home with him post-surgery every day while I’m in the office. So, he has family around to watch him and we also live close to St. Michael’s hospital where his neurosurgeon is.

List of questions:

  1. What will N’s long-term life look like post the radiation?
  2. How long will the radiation keep the AVMs out? Is there a chance the AVM could form again?
  3. What will N’s day-to-day life look like post the surgery?
  4. Is it possible for the AVM to reoccur in a different part of his body? If it does, what does that look like in terms of bleeds, seizures etc?
  5. What are the signs and symptoms post op to watch out for?
  6. What are ice pick headaches, what do they feel like and what can we do about them?
  7. What are the situations in which N might need more than one Gamma Knife surgery? How common is that?
  8. Most common side effects to watch out for
  9. Hair loss?
  10. Increased risk of seizures - how long would this be for and which days would be the worst?
  11. How long does N need to be monitored 24/7 for?
  12. What does the 28th day look like? Would he go home immediately? Would you keep him for observation?
  13. Will there be a difference in swelling, emotions, side effects immediately or more around the 6-month mark?
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  • What will N’s long-term life look like post the radiation?
    Long term radiation varies but shouldn’t have long term problems. Necrosis is a possibility but no surgery is 100% risk free.

  • How long will the radiation keep the AVMs out? Is there a chance the AVM could form again?
    N shouldn’t keep him from anything post radiation. Under normal circumstances. Yes AVM can come back but its rare in adults. Mainly children.

  • What will N’s day-to-day life look like post the surgery? N should go back to normal under normal circumstances.

  • Is it possible for the AVM to reoccur in a different part of his body? If it does, what does that look like in terms of bleeds, seizures etc? Interesting question. Not sure about reoccurring more than a new formation somewhere else. Highly doubt it.

  • What are the signs and symptoms post op to watch out for? Headaches and inflammation. Necrosis. My son had no symptoms and it seemed as if he didn’t get radiation. Went out to eat right after gamma knife treatment. Never had a headache. Still doesnt. His was in march 19, 2024

  • What are ice pick headaches, what do they feel like and what can we do about them? Not sure how they feel like. Son never had a problem.

  • What are the situations in which N might need more than one Gamma Knife surgery? How common is that? After years of check ups if doctors determine that Gamma Knife didn’t work or its staged in which AVM is too big. More than 3cm he might need more than one.

  • Most common side effects to watch out for

  • Hair loss? No side effects from my son. However others do mention headaches.

  • Increased risk of seizures - how long would this be for and which days would be the worst? Is your boyfriend in any medication to prevent such as Keppra? My son has not had a seizure since Jan 2024 because of meds. He also received Embolization treatment to help w risk of hemorrhage and seizures. Not sure if your boyfriend can get Embolization.

  • How long does N need to be monitored 24/7 for? For Gamma knife not at all. For seizures w out meds probably does need to be monitored. Nothing to do w Gamma Knife though.

  • What does the 28th day look like? Would he go home immediately? Would you keep him for observation? He should go home immediately or next day at most if no circumstances present themselves.

  • Will there be a difference in swelling, emotions, side effects immediately or more around the 6-month mark? I did hear about 6 month mark beginning of headaches. My son hasn’t mentioned any symptoms and we’re almost there. Not saying he wouldn’t but so far so good.
    You are a great girlfriend to him. My son actually lost his due to his AVM and all he faced due to it . Keep supporting him and we’ll be praying for him.

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Just saw he is under Keppra in your profile. Ask if maybe a new med would help or increased Keppra. Ask about possibility of Embolization. That would help him too if possible.

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Here are a few answers I can offer from my experience. (Dr. Schwartz also performed my Gamma Knife surgeries three times, but at Toronto Western.)

I felt more fatigued at first from the radiation. I’m still not 100% and I’m approaching the 3-year mark of my last treatment. They still see a vein on my scans.

I had my first treatment at age 10 and the second dose at age 16. It grew back and bled when I was 24. Dr. Schwartz attributed it to my age and said I wasn’t done growing yet when I was treated before. With that being said, I was only the third person he had to treat three times with the Gamma Knife.

Day-to-day life hasn’t changed too much for me since I’ve been dealing with fatigue and the side-effects for almost 18 years now.

It’s unlikely to have an AVM somewhere else in the body, unless he has HHT. (His doctor can confirm if he has HHT, but I don’t think it’s very common.)

I would say to just watch for intense pain, bleeding from the incisions/angiogram sites, etc. Last time my eye was swollen shut for days, but Dr. Schwartz said he had to drill the frame into a muscle.

I’ve never had ice-pick headaches.

It’s common to need multiple procedures to treat the entire AVM, unfortunately. My surgery attempts also included two failed embolizations, one via the artery and one via the vein. It depends on the shape of the AVM, location, and complexity.

I personally never had hair loss or seizures from the Gamma Knife.

The AVM will swell as a result of the Gamma Knife, but your team will continue to monitor him.

I hope these answers help a little, I have to get back to work now. :heart:

-Julia

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Hi Kanika,
Just to share the experience of myvson’s Gamma Knife treatment for AVM…
His AVM in the Left Temporal Lobe was diagnosed in 2014 at the age of 15 yrs. And underwent the Gamma knife in 2016. No major immediate side effect.
With the gamma knife radiation there could be swelling of the brain. To avoid that Prednisolone was prescribed. It caused skin rash like condition.
As a side effect 4 months later he had brain haemorrhage. That caused temporary loss of speech.
With speech therapy he regained speech. But it affected his confidence.
7 yrs later he started playing cricket. That gave him confidence.
You hv to keep a close eye on him on any possible changes,which should be brought to the notice of the neurologist. He’s on anti-convulsants still. The size of the AVM is reduced to 50% or so. But still he has to be careful.
Lot of support is required from the close ones… I wish him good luck…

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Hi Kanika. I cannot speak from personal experience as I haven’t had any gamma knife or embolisation treatment. However as a long-term AVM-er I just wanted to say - I know this must be incredibly hard on you and I really want to help. But neurological deficits (including AVMs) and treatments tend to be different for everyone and its really not a ‘one size fits all’ condition. In addition people recover at different rates and experience different effects/symptoms. Therefore you may seek advice from others and it may give you some comfort. But please don’t be worried if your (and Ns) experience isn’t exactly the same. I wish you both the very best of luck.

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These types of things are a good test of a relationship- my girlfriend stayed by my side the whole time and now is my wife. The fact that she was cool under fire and didnt give up on me under difficult circumstances meant the world to me. You never really know someone until you go thru tough times together.

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She started of really good and very supportive. Got a message from her attesting to her love for my son. However, my son did struggle w energy and fatigue (Keppra side effects). Going out w her became a struggle due to low energy. He also had mood swings on her. All those things affected the relationship. Not sure if now your wife struggled with you in those ways but I am sure did go through others. You’re blessed with her !

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Kanika, as you can see there are many different effects of gamma knife surgery as there are patients. Hopefully, there will be no immediate changes to your boyfriend’s life style and the gamma knife will do it’s job over the next 3 years and repair the AVM. There are many people on this site who have had total success.

But their are also many people who have run into complications or have not had total success. I’m in that category, going through Gamma Knife surgery 3.5 years ago with a reduction, but not elimination. I’m about to enter round 2 which may include another round of radiation or embolism. I did not experienced any side effects, except for small spot of hair loss which is working its way back to normal. I was back to work the next day.

Its a slow and frustrating process, but hopefully one with positive results for N. Good luck to both of you

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I caught your message on the day that I am also headed to have my last gamma knife treatment with a mask not headpiece like in 1992. I agree with others every AVM experience is unique and different. Here’s my experience;

1988- 1991 - 26 years old - non-stop migraine headaches identified with CT - large occipital AVM embolized two times then invasively removed except the deepest part of the AVM in the brain. I lost all my left peripheral vision.

1992 - 6 months later the remainder of the AVM, the nidus as they called it, was gamma knifed and followed until 1995.

Through the years I experienced pulsating tinnitus and headaches which were dismissed with follow up MRI/CT scans.

1995 - last MRI - I was told my AVM was obliterated. I was relieved but still had residual symptoms.

2013 - went back to the original hospital due to ongoing symptoms. I was told I might have an angioma but not conclusive and told I would have to live with symptoms and just be glad I was still alive.

May 2024 - I started the day with severe neck pain. I thought it was from my neck fusion and was having a flare but it was unusual. By midday severe headache started. My husband took me to ER. I always make sure right away that I tell the medical team a bit of history of my medical condition with my brain. They immediately put me on Kepra and did a CT scan. They verified a brain bleed from the original site of my 1991 AVM nidus. AVM was not gone and actually resurfaced. I was rushed to other hospital to do an angiogram. The next step was embolization to contain the bleed, which was successful. Doctor recommended gamma knife treatment to treat the AVM itself. I was told that if I don’t treat with gamma knife it could bleed again. I felt I had no other choice but to treat. I was given 33 years with the first sets of treatment, had two children and now have 6 grandchildren with one on the way. Faith and a good set of different doctors are treating me this time at Tulane East Jefferson. Dr. Kendrick Johnson is an awesome neurosurgeon and I recommend him to anyone. I have dealt with A-Z emotions which are normal as AVM patients go through it all whatever the age. It’s a journey that is life changing. I never thought I would be dealing with this again, so yes, AVM’s can resurface. Live life as full as you can and stay positive. Working on another 33 years. My husband and I celebrate 38 years together his week. He’s been supportive through it all.

Best to all AVM patients. I understand the rollercoaster emotions but hold on to hope. If you don’t trust your doctor or medical team, go find a team that listens and puts you as their VIP when you are being treated. As one of my nurses stated let’s get it done! You got this!

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Hello!

I can’t edit my post but I thought I’d provide an update. This community helped me so much and I grateful we’re not alone.

My boyfriend had his surgery Aug 28th. I was allowed to be with him throughout except for the actual radiation. His parents were also there all day but they only allowed me to be with him in person.

Putting on the frame was the most painful part. His doctors were surprised at how much listening to music helped him - they said they’ll try it for other patients too :slightly_smiling_face:

Recovery has been both better than expected and worse in some ways. His symptoms were limited to extreme fatigue and extreme sensitivity to light. The light sensitivity is fading over time but still hasn’t fully gone away. Mentally, it’s been harder.

It’s definitely taking a toll on our relationship but we’re still going through it together. I think we were prepared for more immediate, physical caretaking which didn’t happen. We weren’t prepared for more emotional, long term care taking. But we’ve ramped up our communication, and we’re trying to make space for each other.

He didn’t have a seizure yet but he has been feeling tingling in his arms. We have no idea if that means the radiation worked or not, or if it’s simply too early to tell. It does feel like a ticking time bomb - I don’t know if his first seizure post surgery will be any different.

His 6 month follow up is set for February. Fingers crossed.

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