One year post gamma knife - and no change

Hi all,

I had my first scan nine months post gamma knife in Sheffield for a large occipital-parietal AVM which ruptured in April 2019 (treatment July 19). There is no change in the size and appearance of the large AVM and related venous varix, possibly signs of an early reaction around the nidus. I wasn’t expecting to see much change at this stage but can’t help feeling a little disheartened and at some level I guess I was hoping to see some shrinkage. My neurosurgeon says the next step is a scan two years after treatment and an angio five years after or when the AVM appears to have gone on MRI. I’m interested in others’ experiences of the period after gamma knife, and whether people with little or no change at their first scan then saw faster progress later on.
Regards
Jonny

My daughter had gamma in Summer 2014 for a small AVM. Doctor recommended angio in 3 years since her avm is barely detectable by mri. In 2017 we were blessed with the news that gamma worked and avm was gone. Will repeat angio in 5 years (2022) to make sure no regrowth since her avm was detected in childhood. Gamma takes time. I hope you have good news in your next mri.

My first gamma knife surgery for right frontal lobe was in May 2007. At the three month MRI, there was just some swelling. Then the following MRIs for the next four years showed it shrinking, so they spaced out my MRIs. In 2011, the doctor discovered “two problem areas–each 0.5 mm by 2 mm in size–that had been missed.” Angiograms confirmed this. I had the Gamma Knife again in September 2012. All MRIs since have shown success.
Wishing you all the best!

1 Like

hi all, i had my GK on the 2004 and 2007 in London. Ive had some scans after it, that they said that it was promising - but the best result was at 2015, when they said that almost all of the AVM had disappeared.

2 Likes

I had almost no change at year one. It us very discouraging as you mentioned. Then hardly any changes at year two. That was even harder to take. However, on year 3 the MRI showed it 95% gone. Only one very small trace of a prior vessel.

I wish i knew how to post my side by side before/after photo of the MRI results. Its fascinating to see.

The physician stated, "if i didn’t know where to look, I could not tell that you ever had an AVM.

He expects it to be gone by my 4th year review this coming December.

This is consistent with what they told me on the first date of my gamma knife procedure. They’d monitor it fir 3 years, and if not gone, wait one more year and do gamma again if necessary at year 4.

Just hang in there despite the discouragement of your year one results.

2 Likes

Thanks you all for your responses which are most encouraging. I was perhaps expecting too much too quickly and will try to be patient!

Michael, how large was your AVM? Mine is 3cm.
Best regards,
Jonny

Mine was no change after a year then the next scan 3years after it was completely erradicated thenxxx

Hi, hope you are well.

Sorry I can’t help with your queries but I was wondering if you could possibly help with mine.

I have recently had my Angiogram which unfortunately showed my AVM to be a Grade 4, rather than a Grade 3 (it has deep drainage, which didn’t show on the original MRI).

The discharge report I was given also details, what I think are worrying risk factors, thanks to my Google searching! I am yet to have my follow up to confirm this. However, the thing I am most worried about is the finding of a Venous Varix. I see you have one too and was just wondering what you were told about this?

Also, if my private healthcare doesn’t cover my treatment in London I think I will be referred to Sheffield for Gamma (hopefully this is still an option for me after the Angiogram findings, as it was my only option before). I was wondering how long it took for you to get treatment in Sheffield?

Again, sorry for all the questions and not being able to help you with any of yours but I am really struggling to stay calm following the Angiogram findings. I feel like I am back in the awful mindset I was in when I first found out about this thing.

Thanks and best wishes

Hi Kel,

Don’t panic about the varix. The varix can be seen as a risk factor, but my research is that this isn’t at all conclusive, and my neuro did not feel that it poses a significant risk in itself. Really it’s your body’s way to adjust to the high blood flow, and it has developed slowly over time to cope with your AVM and take pressure off the other structures. It’s known as a venous aneurysm but it’s not the same as an arterial aneurysm which is typically a ‘higher pressure’ situation. I’ve been told that as the AVM nidus shrinks/closes up the varix will collapse slowly. I’m terms of Sheffield I was diagnosed in April (bleed) and treated in July around four weeks after my consultation, on the NHS. My AVM is also grade 4 with deep drainage. Irrespective of private or not I recommend Sheffield because they have treated so many AVMs, including larger AVMs.

I really hope this helps, I understand 100% your anxiety, including about the varix. I’m personally not worried about it as none of my doctors have deemed it risky enough to consider surgery, and I’m living normally, running, skiing etc. obviously I have checked whether any lifestyle changes are recommended and been advised that this is all fine, and you should check your own circumstances with the docs.

If you have any questions or need to bounce stuff off someone in a very similar boat to your own, contact me anytime!
All the best
Jonny

2 Likes

Hi Jonny

Thanks so much for your reply. Helped put my mind at ease, and your right Surgeon didn’t seem concerned about the Varix.

Gamma is going ahead in April. They are not sure if I will need one round or two (4 months apart) will find out on the day and it could take up to 4 years to work.

I am already struggling with headaches/migraines, I always have but now I know I have this in my head it’s very hard to stay calm when they kick in. I just hope they don’t get much worse after the Gamma.

I wish you the very best and hope your next scan shows your AVM is gone or on its way.

Best wishes

1 Like

Hi Kel,

All the best for your Gamma Knife. I was also told it may be two sessions and was pleased to only need one. They can only tell once they run the Gamma Plan software when you’re in the machine. It’s all about the treatment volume they need to hit to cover the interconnections in the nidus (mine was 3 cm cubed which is small for such a large AVM).

I read some studies suggesting that AVM related migraines can actually reduce/improve following treatment, even before obliteration. I have not seen any evidence that I recall of permanently worsening headaches.

I’m sure you know this but in case it’s helpful…The day itself is long but none of it was painful/unpleasant so don’t stress about that. One thing I would say that I wish someone had told me, is that I felt very wiped out for a good 2-3 weeks afterward and did have some headaches and a general flu like feeling which all fully resolved within a few weeks. I was becoming anxious about it at the time but was assured by the amazing team at Sheffield that this was not radiation induced and that it was more likely to be a combination of the effects of ‘wearing’ the frame all day, combined with a kind of ‘post exam’ stress from the whole build up and treatment. Remember you’ve been through a lot lately and once you are over this hurdle expect to need some time to depressurise!

All the very best and don’t hesitate to shout if you have any questions…

1 Like

Hi Indalo… I am about 3 years IN front of you. I had the knife about 2017. All went well. But all these years later i have been asked to go back to have the knife again, which is not a problem, i found the whole experience very easy and the staff great. Not happy about having a AVM but that’s life. I feel well looked after. I guess the worst thing is the first treatment was not enough, I still have occasional bad headaches and feel can hear my heart beat in my head at night, eyesight is poo, top right side. But still here living the dream. My AVM was large too behind my left ear high up. How are you feeling now, how are your symptoms.

Matty

1 Like

Hi Matty, thanks for the reply and sorry you need a second gamma knife! My symptoms are nil, except for the loss of a bit of my lower left peripheral after the bleed. I’m totally recovered and just hoping it stays that way. How large was your AVM and has it reduced much from the first gamma knife? Did you have a single stage or more than one treatment? It sounds like they just want to finish it off.

I’ve heard of the noise issue when an AVM is close to the ear, that must be annoying! I hope you get to see this thing off soon and can rest easy.
Cheers
Jonny

1 Like

Hi Indalo…
Its was quite large behind my left ear, I would say its reduced by half, looking at the most recent pictures. Yeh i have only had one session on the knife. Its not really an unpleasant experience, its just knowing that its still there and might rupture at any point. I feel good most of the time. Just the eyesight thats bad. Bumped my head again last week. Lol.

Hope all is well with you.

Matty