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AVM Survivors Network

Hi I'm Kennetta

Hi all, I was diagnosed with a brain AVM in my left temporal lobe. The diagnoses was only about 2 months ago. They got me into a neurosurgeons office very quickly to have an initial chat, then for an angiogram, and now I am waiting on a teleconference (due to COVID) next week with an AVM clinic in Melbourne, Australia when I assume they are going to recommend treatment options. I haven’t had a bleed or any other symptoms other than headaches (which they say probably aren’t related), and swishing in my ears.
I am reasonably anxious about it. My specialist told me the options are surgery, radiotherapy or do nothing. I notice many of you talking about gamma knife - what is that? He didn’t mention that to me.
Have you got any advice from your experience about particular things to ask in the meeting, that you perhaps wish you would have, or you found especially helpful? I don’t want to miss my chance to get all the information I need.

Hi Kennetta,

I definitely can emphasize with the anxiety. I had an AVM bleed, removed, and regrow. I am now waiting to hear which options I have as well. It’s very exhausting to worry so much.

Gamma Knife is a form of radiosurgery. I haven’t personally had Radiosurgery, so I can’t really say what it entails.
I would suggest that you ask your specialists about the blood flow of your AVM, the size, and the likely hood that it would bleed. With radiosurgery, you must wait up to years, and monitor your progress to see if it is gone. So if your AVM has high blood flow and is large than another option may be better. You may also want to ask about embolization which is another option to treat a small AVM, or sometimes they use it with surgery and radiosurgery to make them safer.

Take care, wishing you the best.
Ella

1 Like

Hi Kennetta!

Welcome to AVM survivors! Finding out you’ve got one of these things is the biggest shock to the system but what we can tell you is that with modern technology, the outcomes are good and we are all here as proof.

Ella gives you some good advice. The third route commonly offered / taken is embolisation, which is to inject glue or coils or other “embolic material” (i.e. blocking off material) to close the AVM. An embolisation is done using a tiny tube inserted into an artery (often at the groin or in the wrist) and navigate that tube all the way to the AVM to insert the glue etc at the right point. So it is definitely worth asking whether embolisation is an option for what you have.

I think my other question would be “how urgently do I need to do something?” and “do I need to do something / is it better to operate or to leave it be?” Often these things seem frightening and life-threatening and therefore it feels like we need an operation yesterday but that is not always necessary and sometimes there is time to get a second opinion or something like that, rather than feeling pressured into an operation next week.

Otherwise, you’re in great company, ask anything you need and relax as best you can. I think part of going through this is just a bit of time to get your mind around how life has changed and get used to it a bit. It’s completely frightening to start with but it does get better, honest.

Very best wishes,

Richard

HI Kennetta, welcome! I also had a left temporal AVM discovered as a result of a bleed, not fun! I had gamma knife in November of 2016 and have since been given the all clear. I do go back likely about February for an MRI, will be a little stress leading up to that day! Gamma Knife os likely the most common, followed by cyber knife.

I had he choice between gamma knife or craniotomy. It was determined the less risk was gamma knife as mine was on the inside of the lobe. Had it bleed again between gamma knife and obliteration the instructions were to do the craniotomy.

Ask lots of questions! My team encouraged my use of Dr.Google and to ask away! Take Care, John.