Had Gamma Knife done on small deep brain avm in basal ganglia

Symptoms & Treatment Gamma Knife Radiation
1

January 21st, 2014 - I had gamma knife done for the first (and hopefully last) time on my deep 1.5cm brain avm located in the basal ganglia on the left side of my brain. The procedure was performed at Harborview Medical Center in Seattle, WA. I think my experience was different from the typical patient experiences. The doctors and nurses were great. They did their best to pump me full of meds when i was in pain.

Unfortunately...I did feel the back, left screw being screwed into my head (scull). For whatever reason, the first injection failed and I could feel major pain while they screwed the screw into my scull. They tried injecting a second round of numbing medicine but that too was ineffective. I just closed my eyes and tried to bear the pain. And, apparently I stopped breathing because they had to remind me to keep breathing.

Once the frame was on, it took a few minutes and then the pressure on my head felt like it was released. Then I had a ct scan, an mri, and then it was time for the angiogram.

My very first time having an angiogram was in October 2013. Everything had gone smoothly that time. This time, I had a much different experience...
When they made the incision and began inserting the cathedar into my groin, I could feel every bit of it! I told the nurse so she injected more pain meds into my iv. Unfortunately, I still felt the pain. And I felt the pain again when it came time to hold pressure on the puncture site when they were all done.

All the pain meds left me feeling very nauseated. So they gave me some anti nausea medicine and it knocked me out! Apparently I slept for about 2 1/2 hours after that. Then the doctor woke me up and asked if i'd prefer to listen to music or just sleep during my gamma knife treatment, and I chose to sleep.

When the gk was all done, my headframe was removed. I felt like I had huge craters in my head and I was very sore! By the time I got home that night, I went to bed and slept for 13 hours!

The next day my forehead was extremely swollen. The swelling didn't start to go down until day 4. I'm now on day 4 and my forehead is still a little swollen. The only soreness I have is in the back of my head (where the bolts had been).

Tips for anyone planning on getting GK:
Try bringing a neck pillow to the hospital because no matter how hard you try, it is impossible to get comfortable since your head can't lay flat on a pillow and a pillow can't fit beneath the frame, etc.

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I like your suggestion of a neck pillow. I had gamma knife last July and well when the neurologist's assistant asked me about the procedure several weeks later, I told her that it was uncomfortable (to say the least, right) and she responded perfectly ... it's "medieval." Oh, so it's been over 6 months since my procedure and I can still see faint bolt marks on my forehead. Hopefully, your marks will totally disappear before then although they do not hurt at all. Finally, I will still get occasional stabbing pain on my head where they radiated but I was prepared for this pain. Well, I pray that by July 2015, my second AVM will be obliterated so I never have to have a GK again and I will pray for you too!

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My son was 12 when he had his gk-5 years ago next month. He has one little scar on his forehead from the screws that looks like a chickenpox scar. He had to have brain surgery first to relieve the pressure where the spinal fluid could not drain. Instead of a shunt, they put a hole in his 3rd brain ventricle to allow the fluid to drain where the avm was blocking regular drainage. The scar on his head from that surgery is much more visible than the little one from the screw. But at least his hair covers the one on top of his head. He is doing great, and the avm is totally gone!

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I just had a Gk done approx last week but fortunately the pain for me wasn’t as serious as yours. The whole process wasn’t as easy as I thought and I never want to go through it ever again! Just the angio was scary enough. I still have the scar on my forehead though. Like Susan, I hope my avm will be obliterated and I will not need to go through Gk again!

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i've worn that exact same "gown". thanks for sharing the pics and wishing you the best! mari

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I do think that it is worth going through if it decreases the chances of a major bleed. But ya, i certainly won’t be looking forward to it if i have to do gk again.
I wish you well in your recovery.

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Thanks Susan. I will pray for you as well.

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Melissa,
I am glad to hear that your son’s avm is gone! He must be a total trooper for going through all that he did. I couldn’t imagine only being 12 years old and having to go through all that.
Take care.

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Just wanted to say "hi" and that my son had his gamma done at Harborview in August. He has a large grade v avm in his left temporal lobe. He will have 1 more gamma in the next few months. He had a lot of swelling on his face about day 3. He had numbness on his head for a while. No problems with getting him numb- thankfully! Did you see Dr. Rockhill?

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Thanks for the prayers, Momof5, I accept them with gratitude!

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Hi muracat,
Yes i saw Dr. Rockhill. He’s a good guy. Ya i still have swelling in my forehead and its actually made my left eyelid swollen as well. Im now 5 days post treatment.
They were very good to me at Harborview. They say the back screw may have been close to a nerve and that is why it didnt go numb.
I wish you and your son well in the upcoming months! I hope everything goes smoothly in the next gk treatment.
Take care. I will pray for your son’s successful treatment!

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My son was pretty swollen up for a few days. They told him to expect it. So sorry that you have pain. My son had minimal pain. Here's to hoping it shrinks! My son had an MRI in December and it was already showing some shrinkage. Next MRA will be in March. Take care!

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My goodness none of that was available when I had my operation. Good luck and keep fighting mate.

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I wish you well in your recovery too momof5

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Thanks for the tips and info, and I wish you all the very best in your recovery!! My 25-year-old brother is having SRS on Thursday (Jan.30) here in Vancouver...they're using a different technology as they don't offer Gamma Knife here, and I'm wondering if he can expect facial swelling as well. I'm guessing so, but no one has mentioned it.
He had brain surgery at age 21 months and again at age 23 for the same AVM, so we are praying that this is "third time lucky", as he came out of surgery in 2012 with a slight disability. I'm definitely going to buy him a neck pillow, and I hope that helps. He hates angiograms! Oh, and the scars from when they put the pins in for his most recent brain surgery are almost invisible now, so I'm sure yours will fade too.

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From what I understand the external swelling is not from the radiation, but rather from the local anesthesia. Because they are injecting a fluid, and it later drops which causes the swelling.

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He was amazing through the whole thing. After the last cerebral angiogram they gave him morphine and he had an allergic reaction. Thank God it appears we are finally done with all that. He lost the ability to look up with just his eyes and has double vision peripherally--but he has gotten used to that. He turns 18 in March and we are just all so blessed that he is a "normal" kid.