Gamma Knife Treat Set for 12/12/2023 - Incidental Discovery

Hello everyone,

As the topic is titled, I’ve made the biggest decision of my life to get gamma knife radiosurgery in Pittsburgh at UPMC after talking to multiple neurosurgeons.

On 5/2/2023, I woke up and noticed unusual tingling sensations on the left side of my face, arm, and legs. I thought it was odd and decided to check myself into the ER and they assessed me for a stroke (which I was not having) and found some unusual lesions that looked like AVMs via MRI and CR. 1 month later it was confirmed with angiogram that I have 3 small AVMs- 1 dangerous one being in my midbrain (1.2 CM deemed grade 3) and the other two are micro AVMs on each peripheral and are less than 1CM (deemed grade 1). It flipped my whole world upside down discovering this as I’ve lived a high quality of life. This become my #1 priority.

I’ve spent the last 6 months talking to a lot of doctors and all have informed me that my only method of treatment is SRS, especially the midbrain AVM… The consensus agreed that I can get it done, but to be wary of potential radiation induced complications due to the location and have not rushed me to make a decision for treatment. It’s been hard on me to make such a big decision because I have been keen on treating this, but nobody has given me the 100% confidence to do it. In comes UPMC.

I had a telehealth visit with an experienced team in Pittsburgh and they have given me confidence that the right thing to do is to treat them as the benefits of SRS outweighs the risk of monitoring the AVMs in my lifetime. Higher chance of rupture in my lifetime compared to risks of radiation induced complications. They plan on doing all 3 at once which I’ve heard is feasible, but I’m a bit nervous to be exposed to this amount of radiation.

I am very grateful to have discovered these unruptured and I have faith in science/medicine that these can be obliterated. Any advice or experiences with GK that anybody would share with me? I’m nervous, but I’m ready to put this worry behind me. It’s been tough fathoming all of the potential negative outcomes, but I’m doing my best to remain positive.

Anybody have multiple AVMs such as myself? I’m learning that I may have HHT? Doing a test early Jan 2024 to confirm that.

Hope everyone is staying strong. Much love!

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Welcome! I hope we will be able to you out. I had gamma knife in 2016, for one AVM in my left temporal, mine was found due to a bleed. My biggest thing was to have trust in my neurosurgeon, and be at peace with my decision. Which in both cases was yes! I had a craniotomy option but it presented far greater risk due to mine being n the inner side of the lobe and difficult to access. The day of was overall smooth, the frame was not the most comfortable. I was on my way home shortly after noon.

I found the waiting and wondering difficult at the start but that slowly subsided over time, really knowing that as time passed the closer I was to having it obliterated. I did have some swelling around the 6 month mark which seems fairly common, but not to the point of needed a course of steroids. Some folks here have had some battles with swelling.

We have. ton of experience here, and know we are with you! Any questions ask away as it is likely someone has experienced similar among our group. Take Care, John.

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thank you for sharing and for your words of encouragement. What grade was your AVM and did you achieve obliteration? If so, how long did it take?

My AVM was a Grade II, size fell into Grade I, and location bumped it to II. I did achieve full obliteration, confirmed via Angio in slightly greater than 2 years. My two year MRI did not show any signs, but a couple months later was confirmed via the angio. John.

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Welcome to the family & it’s awesome to read you’re staying positive & doing all your homework so you have the confidence in making such a life changing decision… please keep us posted on your journey & I’m certain there are many members here who can trade stories with the same conditions… God bless!

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Hey, @Shpat welcome to AVMsurvivors!

We have a handful of people here with an HHT diagnosis. If you post in the Types of AVM – Pulmonary, Heart and HHT category the folk with any of those conditions will see your post. Please note that these being rare among rare conditions some topics are very old. It’s ok to chat in an old post but there is a risk that people have moved on. We changed platforms in summer 2016 which was a step too far for some.

A diagnosis like you’ve had is a whirlwind. It turns your life upside down. I hope we can be with you through it all.

Very best wishes,

Richard

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Hi my names lisa and im new here to. I have an unruptored avm on my brain to which was found accidental i am also in the middle of making the decision whether to have it treated a descision i am struggling with alot

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Hi Lisa, happy you discovered this without a rupture and action can be taken place. I would recommend getting as many opinions as possible before deciding. If treatment can be done safely, you should do it in my opinion to prevent future problems (listen to the doctors though). I would utilize the website Medifind.com and type in ‘Arteriovenous Malformation’ under condition to find good doctors near you and schedule appointments ASAP. Try to get multiple copies of your scans in case you need to mail them out to doctors out-of-state. You have time to make a decision, so make this a priority to get good opinions before intervention

Lisa,

Hi. Welcome to AVM survivors! It’s good to have you join us.

Please tell us what you know about your condition and ask any questions you need. @Shpat lives in the US, where you have to find your own specialists and is very different from how medicine works in the UK. So don’t worry about the medifind idea.

However we can help you understand what the doctors have told you so far, please let us know and we will try to help.

Very best wishes,

Richard

Hi Shpat. My AVM was found in exactly the same way as you! I had gk 5.5 years ago and still have 1% left! Ive had no complications with the AVM and the treatment went well. Im so glad i was brave and did it. I’m sure yours will go smoothly too. Good luck. Gill.

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I should have doublechecked her location, but thanks for this Richard!

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It’s a great thing that we consider each other equal, very much the same, but the process of getting treatment in the US v UK is as different as it gets!

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I appreciate your encouraging message! I am ready to put this past me and hope with a little luck I’ll be okay! Cheers to you and hope that 1% turns to 0% in the near future

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Thank you Shpat, how did you GK go?

3 weeks removed now and I believe all went well. My head was sore from the frame, but starting to feel normal again. Hopefully there are no radiation complications in the future!

I’ll be getting an MRI in June. Thank you for checking in

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I had cyberknife in 14 of December!(mine ruptured)
Wish you the best

Thank you Betty, were you able to get obliteration of the AVM after cyberknife?

No i had it this December just 2 days after you…
I’m having an MRI in June also.
How are you after the radiation?

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Oh I see- best of luck to you as well. I am feeling fine and relieved it’s all over, but I definitely worry about radiation complications in the future. I’m hopeful all will go well and will be proactive if I start to feel off. How are you feeling after treatment?

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I’m well some nerve pain and i feel my head a little ‘squished’ but nothing too much to bother me.
I don’t worry about the radiation complications anymore,mostly worried not to have a second bleed.
I feel like with the complications you can have some treatment or it will get better by time…

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