Posterior fossa small AVM - treatment options & symtomps - any advices?

Types of Avm's Cerebellum & Brainstem
1

Hi Guys,

I’m new to the community, but I’m really glad that I found this forum. I’m originally from Poland and I wanted to share my story and ask some questions at the same time.

I’m AVM survivor, had a bleed and stroke in April 2024 at the age of 40. At first, the docs have told me that I have cavernoma near the brain stem that bled. Because, I read more and more (I’m quite inquisitive person :slight_smile: and 1 of neurosurgeon saw on MRI a tangle of vessels, there were 50/50 chances that either is cavernoma or AVM. After all, I did the angiogram recently (July 2025) and they
confirmed small (5-6mm, <1cm) Spetzler Martin grade 3, Lawton-Young grade 2 left posterior fossa arteriovenous malformation. This AVM is fed by the bilateral superior cerebellar arteries, with deep venous drainage into the vein of Galen. There are no intranidal aneurysms.

In terms of treatment, most of the docs opinions so far (I have some more consultations pending) is to do the radiosurgery (although 1 told me that is it safe for resection and 1 wants to embolize it through TVE - transvenous embolization).

I’ve read some of the opinions here about radiosurgery, I’m scheduled in about 2 weeks from
now to have Gamma Knife session in Prague, Czech Republic. Did any of you had similar AVM case (size, location, previous rupture) and was treated by Gamma? I’m also taking into
consideration Cyber Knife and Linac, but read that Gamma is ideal for small, deep AVM in
the brain stem area.

My main concerns are:

  • that I have to do another angiogram (they told me that for Gamma treatment it has to be “stereotactic angio” with frame on, so the one I did is no good) and it’s an invasive procedure with some risk
  • the side effects after Gamma, like seizures or balance issues and similar (I already have the latter).

I would appreciate any advices as I’m scared and not sure which treatment option should I choose to get rid of this AVM.

Thank you,

WuHu

3 Likes
2

Hello!

I had a rupture from an AVM in my cerebellum 2 years ago this day.In the hospital where I was,doctors tried embolization but stopped because they were afraid of another bleed or stroke,so I had cyber knife treatment 3 months later.Here in Greece is more common the cyber knife than gamma knife treatment,so I chose that.

I thought angiogram is not needed for gamma,I’m not sure but for cyber knife I didn’t need one.

Mine “side effects” so far is just 7 months post radiation I had some Headaches and felt like edema,but lasted for two months.I have searched about seizures and usually in the cerebellum area we don’t have them.

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3

Hi!

I think most of us brain AVM people have had more than one angiogram, so you definitely won’t be alone on that. I had three altogether: one before (actually during) embolization, one eight weeks later to check completeness and another a year later also to check completeness. The embolization that I had was effectively a several-hours-long angiogram with glue injected rather than just contrast material.

My understanding of the risks associated with an angiogram include having clotting or bleed trouble at the insertion site, actually having the catheter tear the artery leading to a haemorrhage, or going into a vessel that is too small and having an ischaemic stroke. You can also react to the contrast material but if you’ve had one angiogram already, that is unlikely to be an issue. We do know less than a handful of people who’ve had a tear.

I’d say taking a transvenous approach seems more liable to a tear because veins are not high pressure vessels, which is why an AVM presents a bleed risk itself (but this is me presuming rather than having any direct knowledge or skill or qualifications!)

In regard to the dizziness, this may be to do with the blood whizzing through your AVM and disturbing the flow in some of your veins, leading to dizziness. I had a dural arteriovenous fistula that was squirting blood into my right transverse sinus with sufficient force that blood was going in all sorts of directions, so I had weird feelings on the top of my head, could hear the whoosh of the blood every second in both ears and posited that if it was making that much effect it was probably flowing the wrong way along my straight sinus (which the vein of galen also drains into) once a second: if you’ve got weird blood flow going on in your cerebellum, I’m not surprised you’re feeling dizzy or weird. So it will be something to do with what your AVM is inflicting through your veins. I reckon. Note: I’m just a patient like you, not a doctor of any kind. Anyway, likely different from what you’d experience post zap.

There’s got to be a good chance of side effects post gamma knife or any intervention but so long as the risks your doctor is describing for you are similar to that described for others, you’ve got the same situation as others round here. I think mine offered me a “5% chance of something bad happening, including death,” which horrified me at the time but I was convinced that I needed to take action as my AVM seemed to be getting worse, my symptoms changing month by month.

I’d say that doing things in your cerebellum carries more risk than most of the people here but you’ve found the relevant section, so have a read of the other stories in the Cerebellum section to get a feel for what you want to do. There do appear to be more people being given an option to act on cerebellum AVMs than in the past and I think at least a handful of patients with an AVM in the posterior fossa or thereabouts.

Welcome! You are among friends!

Richard

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Thank you bettybo and DickD for your answers, I really appreciate.

I decided to take a shot and go with radiosurgery, now I need to decide which of them is the best for my case, I have Gamma Knife (but I need to take another angiogram (Stereotactic DSA), for which I have to travel to another country (Czechia) for about 7-8 hours, modern LINAC accelerator (which is the closest to me) and CyberKnife (about 4h drive).

Did any of you was treated by modern LINAC accelerator (I’m aware of research and stats, but I was wondering if any of you has personal experience, especially in the brain stem proximity) or had similar in size AVM in or near the brain stem?

Thank you

5

Not me. I had an embolization.

There are a number of people who’ve had LINAC treatment: topics discussing LINAC since 2017: so have a look through their stories.

We moved technology in 2016, so you may well find topics earlier than this but a lot of people struggled to adapt to the technology changes and stopped using the site, so 2017 onwards is a good range to search.

Best wishes,

Richard

6

I completely understand your trepidation.

My daughter has a small AVM in the brain.

We researched, deliberated, sought Dr.s opinions and looked for those that had experience for 2 years.

She recently had the Gamaknife. I was also concerned about the angio, but seems this is done alot.

The day took 6 hours, they gave a sedative, put the “halo” on, did the angio, did an mri, discussed the results, then did the gama knife. The radiation itself took 30 minutes. then they took off the “halo”. She felt tired for 3 days and had some numbness on her head. Otherwise, we were relieved it was finally done, and now we are keeping positive that each day we are closer to this being gone.

1 Like
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Hi, i just found out i have one small avm in my posterior fossa too. I was wondering how is your daughter ?

8

Hi,

I just found out that I have a 5mm avm in my posterior fossa which has not yet bled, luckily.

I am from Romania, and the only doctor who can offer Gamma Knife here refused to do the procedure for me.

I wanted to ask if you finally had the procedure? How was it and how are you feeling?

Thank you

9

Hi Amareea,

I had Gamma Knife procedure 1 month ago, in Prague (Czech Republic). I would say it was OK, although I felt stressed a little bit, but I haven’t feel any pain, apart from 4 injections in the head before they put a frame on my head (but it just lasted seconds, and I would say it was more unpleasant rather than painful).

I took a sedative pill before the procedure (but I was awake all the time), they put a frame on my head, had MRI and angiogram through my femoral artery and spent around 20 mins in the Gamma machine. So all in all, it went really smoothly.

I’m waiting for any results around 6 months mark after the procedure.
Because I had a bleed 1,5 year ago, I have tinnitus in my ears, dizziness and burning right half of my face.

Feel free to ask, if you have any additional questions - I’m still very early after the Gamma, but I hope that I will finally get rid of this AVM safely.

Thanks,

Wuhu

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Hello and thank you for your answer!
I am glad that you had the opportunity to be treated.
May I ask how much the procedure cost?
By the way, are you from the Czech Republic or did you travel there?
How did you get to that clinic?
Thank you

11

hello again
i’m curious if i can talk to you about some aspects of your avm?
if you are willing to tell me how deep it is in the cerebellum how you treated the bleeding…and of course what other details you would like to give me :slight_smile:
thanks

12

Hi Amareea,

For the whole procedure I paid a deposit of 105 000 CZK, but after the treatment they gave back me the overpayment, so the overall cost was lower than that, something around 86 000 CZK. I think the best option is to contact them directly - here is a link with the contact details to Stereotactic dept.

https://www.homolka.cz/nase-oddeleni/11635-neuroprogram/11635-odd-stereotakticke-a-radiacni-neurochirurgie-gama-nuz-osrn/11770-kontakty or you can also contact foreigners receptions Contact - Nemocnice Na Homolce

I’m not from Czech Republic, I’m from Poland and the Prague site was the closest to me in terms of the distance (there are Gamma Knife sites in Poland, but they told me they do not treat AVM).

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My AVM is 6x6 mm in the posterior fossa, that bled 1,5 y ago. I spent almost a month in hospital, but initially I was diagosed with cavernoma, not an AVM. Finally, I decided to do the angiography and it confirmed that I have an AVM.

The bleeding was not treated so far, I talked with numerous neurosurgeons, including these from the US and it was mostly to treat it through Gamma or surgery (but only in the US). Polish docs told me not to do the surgery (it is too risky due to brain stem proximity) or embolization (as it might also be too risky and cause another bleed). So the Gamma was my last options and I decided to go with this option.

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were you in a coma?..
were you left with disabilities?..
how are you feeling?

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No, I wasn’t in coma fortunately.
I have dizziness, tinnitus/ringing in my ears (especially in the right one, though my AVM is more on the left side) and burning right part of my face (especially my right eye) So all in all, I’ve been lucky.

I’m still feeling quite weak and tired, especially when there is a weather change and when it’s windy.

1 Like
16

I’m glad you’re okay though.
I hope the gamma knife works…thank you so much for sharing your story with me🙏🏻

What symptoms did you had before the bleed?

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I didn’t have any… there were no signs, like headaches or something.

Suddenly I felt a pain in left part of my head and ringing/buzzing in my right ear (although I didn’t faint) and then couple of minutes after the emergency team came and they took me to hospital.

And by the way, how did you discover your AVM? Do you have any AVM-characteristic symptomps?

18

Hi,

Did anyone who have Gamma Knife treatment heard about complete obliteration, 1-1,5 years after the procedure? I know that typically it is somewhere between 2/3-5 years timeframe, but I read somewhere that there was a case of 13 months obliteration after Gamma.

Did anyone here experience faster than expected obliteration, confirmed by the angiogram?

19

I think we have seen one or two resolutions in 18m-2y but I can’t remember who the lucky folk were. If you’re lucky, they may see your post.

20

Hi Amareea, I hope you are doing well. The Radiation dr said this was one of the smallest ones he has done. It has been 2 months since the Gama, and so far, other than what I put above, she has been fine, no side affects thus far, although i believe that if there would be, it would be in months 4 - 6. I found this study attached very helpful, it shows risks of Gama based on size, location and other factors.

I learned that in the procedure there are 3 key people, the radiologist, the physicist, and the surgeon. I felt it was important to find a team that worked together and had done many AVMs. As we are in New York, that is possible to find. I think in Europe they tend to have centers for this.

Risk of ARE Study by type of AVM and location.pdf (746.7 KB)