Hi everyone. I (30, F)am from India (treatment hospital Artemis in north).
I was diagnosed with a right frontal AVM after I had a bleed in Feb-26 (classic thunderclap headache with vomiting). I was admitted, managed (no surgery) and discharged in Mar-26. Had seizure during hospitalization so I am on medication for that but no other symptoms now. Had a follow-up CT in april to confirm no swelling left from the bleed and was recommended to do a DSA for further planning.
In May-26 (5 days ago) I had a DSA done and while i havent had a detailed chat with neurosurgery yet, my neurointervention doctor verbally told me that it’s a small but a bit deep avm in right frontal lobe and had my brother meet neruosurgery team for preliminary chat. They recommended cyberknife. I am supposed to talk more with them in the upcoming weeks. However was hoping if anyone knows:
1. What are obliteration odds with cyberknife?
What side effects can be expected? Short and long term.
Is there another doctor anyone can recommend. Location doesnt matter if they take virtual appointments.
It has been a great inspiration reading everyone’s stories here for the past few months. Very grateful!
Firstly, welcome! hope we are able to help in your journey. I had an AVM in the left temporal lobe, on the inner side, and ended up with Gamma Knife. I was told by my neurosurgeon he felt 90% chance of obliteration within 2 years. At 27 months I had an angio an confirmed obliterated. I am currently on siezure medication due to one in 2023…my GK was in November 2016.
I had very few effects from Gamma, but some from the bleed.
In respect to second opinions, Barrows Institute in Arizona and Mayo Clinic in Rochester, Minnesota would be two suggestions from me. I was in Canada and had my treatment here, but if I had been dissatisfied in anyway those would be my first two choices for a second. John.
Thank you for sharing you experience and recommendations John! Great to know you are on the other side now.
I’ll check these clinics and reach out to them as needed. I read few topics in cyberknife last few days and some side effects stories were very overwhelming. I understand everyone’s situation is different though and very thankful to be able to know everyone’s experiences.
I often say that we won’t know the “right” decision until after the fact. For me it was being completely at peace with my neuro team, their open and honest communications and being comfortable with all the information I had to make my decision. I felt that my Dr. giving me a 90% likelihood of success was really high, and likely as high as anyone would say. My seizure is not confirmed related although certainly not ruled out, but liekly due to the damage caused by the bleed if that is the case. Again, there are few certainties which makes it more challenging to reach peace with decisions. Take Crae, John.
Very true. I’m meeting my neuro team for a more detailed consultation in a week, so hopefully that answers the questions and concerns I have.
About your seizures - certainly could be bleed related however the gap is quite big. I had my 2nd and last seizure in february, four days after the bleed. Havent had any more since but I am also on medication for that so thats probably why. Will likely remain on it for entirety of latency period, but will confirm with doctor. How long did your team say you’ll be on medication?
Thanks a lot for your sharing your perspective and experience John!
I’m tolerating the medication well so I am currently on it indefinitely. I plan to have the discussion about perhaps weaning off after I retire. Keep us up to date after your next appointment, make sure you have all your questions figured out! Take Care, John.
As you know, everyone of these stories are a little different, but this seemed a little close to my circumstances. After suffering a seizure in 2018 while working out at the gym, my AVM was discovered at the ripe old age of 64. The doctors gave me all the options of surgery, embolism, radiation or just monitoring it given the fact that I had probably had this since birth and it was the first time that it acted up.
I went with monitoring it and went back to my normal life. About a one year later, I suffered another seizure after a morning workout. They neurosurgeon put me on Keppra.
About a year later, i was getting a little lax on taking the medicine everyday and I suffered another seizure while out running. The doctor doubled the dosage. Two months later I suffered a brain bleed. My neurosurgeon said the only option I had at that point was radiation treatment. He said it could take form 3-5 years to obliterate AVM. I had radiation surgery in December 2020 and last October it was gone.
I continue to feel some lingering effects from the stroke, but had no negative effects from the surgery. My neurologist has kept me on Keppra to decrease any chances of future seizures and I’m scheduled for a followup MRI in October.
I’d highly recommend Dr. Pandy at the University of Michigan Hospital in Ann Arbor, Michigan. He never overpromised but always remained confident. He is now the head of the neurosurgery department at the University.
Hi @TSparky - thank you so much for sharing your experience, very glad to know it worked out for you. 4.5 yrs for obliteration is on the longer side I suppose but good to know it goes away eventually. Hope you can come off the medication with time as well. all the best!
@JD12 - Hey John - yea I have the appointment on tuesday, will update here. thank you so much, take care
Update on my end - i had my detailed consult and neurosurgeon said that I have a fairly small superficial drainage and although its in right frontal lobe, its a tricky location which kind of puts it into SM grade 2. He said the location is what makes him recommend cyberknife rather than resection.
Further he said 85% chance of obliteration in 3 years, 90% in four years. If at all, its still there at 4 yrs they’ll do a relatively small dose again. As for side effects, he said approx 5% patients develop the kind of edema that could require steroids to manage.