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AVM Survivors Network

Decision time -Craniotomy or Stereotactic Radiosurgery for unruptured AVM?

#1

Met with my neurosurgeon today, and it is crunch time. He told me I can choose between undergoing a Craniotomy or Stereotactic Radiosurgery. He explained that there are over 20 types of SRS. It would not be Gamma Knife or Proton beam, it would be Brainlab SRS. He said I had a 90% chance of a successful treatment with Brainlab SRS given the size and location. I have an unruptured AVM Grade I closest to the language area of my brain. He explained that the risk of deficits to my language from either treatment was minimal, but less so from the SRS. He said my risk of seizures from either treatment would be 1%. (These statistics are personal to my individual situation and not generic)

His recommendation was that I undergo SRS, but that it was my decision which treatment to pursue. My logical side says to choose SRS, and not to stress about having a bleed during the wait period. However, I already suffer with stress and anxiety so I’m not sure how realistic this is for me. I am also nervous that they start interfering it whilst it is still inside my head, and that symptoms may randomly appear several months later. My emotional side says choose Craniotomy and get it fully obliterated and over and done with now and move forward in my life. I have already mentally prepared myself for a craniotomy, the prospect no longer completely terrifies me. But the length of recovery time may be an issue for me.

I am so fortunate to have a choice. With either option, I will have a top neurosurgeon, very experienced. I trust them and have full confidence in their opinions and abilities. I will lose all of my medical coverage in a few months time so I have to act quickly.

I would love to hear from anyone who has had the Brainlab SRS? Did you have any side effects? Where you put on any medication after? How many treatments did you have to undergo? Was it successful?

If you have undergone other types of SRS for unruptured AVMs, how did you cope with waiting up to two years for results as to whether or not it was successful?

If you had a craniotomy for an unruptured AVM, how long was your recovery period? When were you able to return to work?

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#2

Nice to be in a position to make the decision! I was after the bleed and had gamma 6 months after. I know about the decision conundrum…I had the option to go either way but ultimately the craniotomy presented more risk. I was a Grade II. Grade I in size but due to location it bumped it up and added to the risk. I can tell you the time from treatment until getting the all clear is challenging, for me it was 27 months. That is fast in the SRS time line.

The fear of another bleed scared me greatly, but the risks of the craniotomy led me to my decision. I was happy with all that went into the decision I made, and tried to not look back. I can’t say given similar risks in procedure what my decision would have been…Know that you have a whole bunch of people in your corner whatever you decide. Take Care, John.

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#3

Hi.

As John says, it’s good to have a couple of options to choose from… that way you can choose the one you prefer.

I know what my choice would be but I don’t want to sway you either way unless you ask me to. It’s got to be your choice.

What I would say is that both have risks and both can have effects you don’t want while you’re getting better, so whichever one you choose, if you get something you didn’t want occurring during getting better, don’t criticise your decision. Don’t regret it. Just know that for each decision you have to make there’s always the one you didn’t choose but it should never be regretted.

Very best wishes

Richard

One of my favourite poems…

THE ROAD NOT TAKEN

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Robert Frost, 1916

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#4

Hi @aliveandkicking, it can feel like an impossible decision, I was there last year. For my AVM I had equal options like you (temporal grade 1/2) of gamma knife or craniotomy. I chose craniotomy, and had it done in December. With regard to your recovery question: At this point I am just over the 3 month mark, and still recovering. Physically I am able to hike 10K fairly easily now and recently took back up running short distances and working out with a PT. Cognitive I am still quickly tired, and a little bit forgetful. Some days are better than others. I am not back to work yet, but my work requires almost full time cognitive attention(as a therapist). This is my story up until now, but recovery is very personal and depends on many individual factors. Let me know is you have any questions. Greetings, Karin

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#5

I also have that choice. Mine also hasn’t ruptured but it is a residual one so my original AVM 19 years ago that did rupture . Back then I had craniotomies and had no option. I will say being able to make the choice is hard but a much better circumstance!! Just like all things in life we make choices that are best based on what we know and some of the final outcome is out of our hands, this is why making your choice is a better option since you get to choose the which one and who performs it! Mine is close to language and I also have anxiety like you so I know how hard it is to make this choice. If it makes you feel any better I cried many hours and read a lot of literature to make my choice because it is hard. Give yourself grace and go with what science and your heart tells you is best. :heart:

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#6

Thank you @DickD @kspinks @JD12 and @Kare for sharing your experiences and your kind words of support and encouragement. I’ve had a really rough few days, lots of tears and research. I made my decision yesterday and am now booked him for a craniotomy in 2 weeks time. (There is one sentence I never thought I would be writing). It hasn’t really sunk in yet, as it is all happening so quickly, but at least I have less time to worry about it.

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#7

Decision made, we are with you! Take Care, John.

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#8

Hi there.
I have a grade 2 AVM front left temporal. I had the exact decision to make and my consultant wanted me to have surgery - like you I thought get it over with but I could not get to grips with the recovery time and having spoken to a friend who had surgery (for a tumor) it took her 2 years to get back to normal. I went for Gamma Knife and had this last week at Sheffield. Like you low risk of seizures but possible however so far so good. It was not a mini-break, not an easy process but I was in and out and other than a few bruises from the frame I have no side effects.

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#9

Less time to worry that is good! I know it is difficult and it is an emotional rollercoaster… but try to take time to relax en rest your body before the procedure. You will do great and it will be over before you know it. Again, let me know if you have any questions. Take care, Karin.

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#10

It’s a very difficult decision but you need to be the one to make the decision… I had craniotomy with my AVM but it had ruptured a month prior… stay positive and know there isn’t a wrong or right decision… God bless!

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split this topic #11

A post was split to a new topic: Trying To Decide

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#12

Hi. Good luck with your surgery-- when is it/was it? Well, my thoughts are with you, and I look forward to hearing how it went.

Each morning, as I watch the sunrise, I find myself thankful for it… another day :slightly_smiling_face:

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#13

Hello,

My name is Bea, I was also diagnosed with an AVM Spetzler Martin Grade II. in my left frontal lobe, including the Broka area and it was possible to be approached endovascular, so mine it was treated/ obliterated by endovascular embolization. It is good to have multiple options and possibility to decide between them :slight_smile: My advice for you is to consider the risks and benefits of each option, reach out to top neurosurgeons, ask for second opinions and take in consideration the endovascular embolization too, it is the less invasive treatment method, you should definitely consult an interventional radiologist too before taking a decision. It is a hard decision to be made, make sure you have all the information that could be relevant. If you have any further questions don’t hesitate to contact me :slight_smile: Kind regards

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#14

Thinking about you! I hope everything is going well. Take Care, John

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