Hi All, I had my 3.5 year post Gamma Knife MRI with contrast and my Grade 4, AVM is unchanged. It has been minimally responsive. I have been told next step is another Cerebral angiogram at 4 years, super selective, under general anaesthetic (all others, I was awake) to see if they can look at embolisation to any part of my AVM.
Has anyone else had this experience? Many thanks x
Sorry to hear, the minimal response must be frustrating. It will be interesting to see in 6 months of other options are suggested, as you mentioned. Is there any talk of another GK treatment? John
I’m sorry you’ve spent so long looking for a great outcome to get so little but, if it helps, I’m a great believer in embolization, so don’t give up. Obviously, it’s important for the doc to be confident they can address it that way: you don’t want any inappropriate risk: but if they can, my operation was pretty darned instantaneous.
It took me 2 years to feel “better” post op but the reversal in the situation was instant.
However you go, do let us know how you’re doing because I’m keen to cheer you from the sidelines!
Very best wishes,
Richard
I am on about the same timeline that you are on. Radiation treatment in December 2020. Progress had been slow but then my last MRI showed an 80/90 percent reduction in my 3 mm AVM. Going in next week for my Angiogram to determine next step, if any. These are strange things in our heads. Mine had only been reduced by 30% in the first year and then nothing until the last year. I feel for you. I know how frustrating it can be to sit around and wait.
Hi Kel, sorry to hear this. I had the same experience, also grade 4, occipital, and no response at 4 years. I was offered gamma knife again and quoted good odds but my primary neurosurgeon and I both felt it u likely to respond well, and studies I found suggest that second SRS after no initial response has fairly low success rates. So we looked into endovascular options and eventually I was treated successfully by Renet Chapot in Essen Germany. It’s not perfect as I lost a lot of peripheral vision, but the AVM appears to be dealt with. Mr Chapot has a strong reputation when it comes to treating large AVMs which others may not approach. Happy to share any details, message me if helpful.
Best
Jonny
Thank you for your kind response.
I am not sure if further Gamma Knife will be offered as I have been minimally responsive. Frustrating I need to wait until March/ April next year to see what’s next.
Thank you for your response.
I will keep you posted on the next steps.
Thank you for your response.
It’s frustrating to wait this long and not really be any further forward.
I am glad your AVM is shrinking. I really hope you have a positive outcome after your angiogram.
I am happy to report that my AVM is now gone. Not sure what to do with myself, but trying to get back to normal as soon as possible.
Thank you for your response.
I am glad your AVM has gone. Do they expect any improvement in your vision?
Had a feeling I would be in this position based on the finer details of my AVM and lack of progress at every scan. I am worried as I was initially told Gamma Knife was my only option and embolisation was too risky based on complex feeders.
Frustrated I have to wait until the 4 year mark to even see if they can do embolisation. Is this just standard practice as the radiation can work for up to 4 years?
I have started to research Mr Chapot and he is definitely a leader in this field. Would I have to approach him on a private basis and pay for this myself or would Mr Kitchen approach him?
Also if embolisation is an option do they move quickly to do this and how long for recovery etc?
Sorry for all the questions.
Best wishes
Hi Kel,
Firstly, try not to worry too much. I can’t remember if you had a prior bleed, but if not your risk of bleeding is quite low. I already had one bleed and had a series of large venous aneurysms so intervetion while risky was agreed to be lower risk than leaving it alone. I fully understand the frustration of not seeing progress from gamma knife, unlucky as it’s pretty good even on larger AVMs.
You would need to approach Mr Chapot privately and it is costly, and charged per embolisation, so if if it’s complex he may want to do it in 2 or more stages. I know of one other person here who has just completed his third and final stage. I’ll send email addresses to you for contacting the Alfred Krupps institute and Chapot’s secretary. You can arrange a private consultation and for this you will need copies of your selective angiogram. The NHS will release these with your permission on request by Alfred Krupps, or they may provide them to you on disk to forward on. Mr Chapot can then at least advise you. This costs from memory around €250.
The exact plan with timing depends on his workload and strategy for your AVM. I waited a few weeks.
They say my vision may still improve a little as it can take 2-3 years for collateral blood flow to establish, and if there is any residual flow keeping that part of the brain alive it may give me at least some vision in the lost field. But I’ve adjusted amazingly well and can ski, cycle, and do daily stuff no problems now.
Let me know if I can help.
Best
Jonny
3 posts were split to a new topic: Seeking Dr Chapot
My daughter is on a similar timeframe.
She had gamma knife in feb 2023.
We just did a mri last week and the drs don’t see any change.
It’s so disheartening.
We now need to consult with her drs in America to see what they want to do moving forward.
She doesn’t want to continue with treatment because she’s already lost use of her hand. She doesn’t want to suffer any more. It’s a really hard position to be in.