Hello everyone i’m new here and so glad to find you!My avm ruptured 15 September 2023,two months ago and that’s how i found out i have one.I was hospitalised and tried embolization but unsuccessfully.I don’t know the exact size they told me it’s small,in the left side center of my brain.(i have all the info on cd but not available cd player).I have scheduled cyber knife in 15 of December.Im so scared though, i m hearing about swelling,or other things that can happen and i hesitate.My doctor told me there’s no other option now.So what i’m asking is for your experiences,did you have any complications after the treatment?I’m also afraid of another rupture untill the healing.I also have many other fears that i imagine you can understand.thank you in advance and sorry for my poor English I’m from Greece.
Welcome! Καλως ήρθατε!
Never apologise for your English! (This is about as far as I can go in Greek!)
I hope some of the radiotherapy friends can share their experiences with you and I’m sorry that the embolisation didn’t do what was needed. I’ve had just an embolisation.
If you read around the site you will find stories of perfect success and other stories of people having greater difficulty with their treatment, including as you say with oedema. I think the oedema is just something to be aware of, though: if it happens know to expect it and to talk to the doctor about whether it needs treatment. Sometimes it doesn’t happen significantly, sometimes it is treated with steroids and sometimes it gets much more difficult: it is perhaps impossible to know.
The important thing in my mind is to satisfy yourself whether the treatment is important to do: we are always balancing the risks of leaving it untreated against the risks of treatment: there is no risk-free option. You just need to be satisfied that you’re happy to follow whichever option you choose.
I would say that if you’ve already had a bleed and you’ve already had an embolisation, the cyber knife should be much less difficult an operation to go through. You’re right that there are issues that can arise after the operation but the operation itself is much less difficult I think than anything you’ve already been through.
Please ask anything you like. It’s great to have you find us and I hope we can help you with your thoughts.
Very best wishes,
Richard
Thank you so much for your response,i guess i know that nothing is certain and no one knows how things are going to be that’s why I’m looking for experiences so i can get some courage from them 
I hope some gamma people will reply for you (gamma knife is by far the more frequently used; I think the equipment for cyber knife is less available). It’s definitely not all bad but there is often a risk.
I know @JD12 had gamma knife radiotherapy to resolve his AVM and seems to have done well by it. He hasn’t had a wholly smooth path but I’m sure he’s doing well.
Best wishes,
Richard
Hi
My AVM is in the Thalamus. It may be in a similar area to yours. I was told, if compressed, it is roughly the size of a Golf ball, which is quite large.
I have had two bleeds, two Embolizations and 1 hour, 30 mins ( in two sessions) of Gamma Knife surgery, in 2015. I have swelling where I had the Gamma Knife surgery. My main issue has been Fatigue and a gait issue with my left leg - which is improving with exercise. I also have Double vision since having my second embolization. I wear glasses for this. I was also told I needed to have the Gamma knife surgery. It wasn’t a complete success as part of the AVM is still active. I also had to have a VP shunt inserted in order to have my surgery. With your AVM being small, you won’t need as much surgery or have the same side effects as me I’m sure. All the best. Claire.
Hi ! Thank you so much for your response you gave me some courage.Im battling with my psychology every day ,mostly because I am thinking of the side effects and my kid because he was next to me when i had my bleed and I don’t want him to experience the same thing or anything like that again.When yours ruptured the first time were you being careful you don’t increase the blood pressure?Or you were back to reality the same way as before?I personally quit my job and lifestyle as my doctor advised me to,but the other doctor where i was hospitalised was telling me to carefully get back to reality.I also have double vision to my left eye I haven’t got glasses yet, I don’t know if it’s permanent.
Hi B
I did take 12 weeks off work after my first bleed and tried not to over exert myself during this time. I work in an Office in the town where I live. It isn’t a busy place, so I’m very lucky. I was always told to avoid Anti-Inlammatorys and anything blood thinning. I have natural Low Blood Pressure. My Consultant said that could be God’s way of looking after me, which is comforting. My Double vision is permanent My eyes can no longer work together as a pair, I was told. If I cover one eye, I have normal vision. I used to research any vitamins or supplements to see if they are high anti-inflammatory. Most of them are. I don’t worry too much about this now though. I take an Organic vitamin C and a B Complex. My Consultant wants me to have another surgery. It is an Embolization type of Procedure involving two surgeons It is supposed to prevent further bleeds At present I am wary about having it because I don’t know anything about Risks and Side Effects. It is a new procedure and I am unsure of how many of them have already been carried out.
So yours wasn’t gone with gamma knife? I haven’t heard about the procedure you are talking about.
I have a low blood pressure as well it’s called stigma here i don’t know how its name is in English.I guess i wouldn’t care about double vision too it’s something not that important for me…
Hi! I had a very similar experience to you. I received gamma knife about a year ago and I did not have any swelling or complications. The procedure itself was pretty relaxed and I even went to my university lab the next day. Now I am almost back to normal, except for getting fatigued faster than I used to (I think this is my brain still healing from the bleed, not because of the radiation). My AVM has not been obliterated yet but to help avoid a rebleed I avoid strenuous activities such as heavy lifting. I hope my experience calms your nerves a bit and if you have any questions for me please feel free to reach out!
Thanks it helps a lot talking to people dealing with the same thing.How was your psychology after the bleed?i m a very nervous person, battling with anxiety in the past and now it’s back
I was quite anxious as well and having so many activities taken away from me, I spun into a bit of a depressed state. I tried to take it easy on myself and took small steps into getting back to my regular routine. I tried not to put too much pressure on myself. I found it really helpful to ask for what I needed. Like if I was on a walk or hike with friends I would ask to sit and take breaks whenever I needed. Take care of yourself and people will understand
Yes I had Stereotactic Radiosurgery, also known as Gamma Knife. I was in hospital for two nights and was able to fly home to Ireland afterwards. I was worried about flying but it didn’t affect me at all. My Consultant cannot tell me how long it will take for swelling to resolve. Hypotension is the medical name for Low Blood Pressure over here.
Hi Betty,
I had a hemorrhagic stroke due to an AVM (left front lobe) in October 2020. After many diagnostic tests, and months gone by, they finally found the AVM. Size 2. Mine was not operable due to location. Surgeon wouldn’t risk it. So, I had stereotactic radiosurgery, (gamma knife), in June 2021. It’s working… they say it can take 3 years to know for sure if they obliterated it. Every year I do a MRI, and they’ve been keeping track. This June 2024, I will do an Angiogram, and they’ll look at in more detail. My hope is that it’s gone. I agree, it’s hard not to worry. As far as difficulty of procedure, it’s actually quite non invasive. At 1 month following procedure, I had a seizure. They treated me with steroids. Then at 3 months post, I had a second seizure. After a MRI, they said it wasn’t swelling, but hemosiderin (iron) deposits around AVM, where it was resolving. The deposits are on my motor strip, and that was causing the seizures. So, probably not the result of SRS. I am now considered Epileptic, and take meds for it. There is no guarantee of side effects or results, with everyone being different. Just keep working with your Physical Therapist (if you have one), and let them know your limitations. Yes, try not to do heavy lifting, but if it happens, you must breathe properly, to avoid pressure. I take care not to do any activities that might ‘jar’ my body. For instance, no horseback riding, roller coasters, etc.) I also take BP meds to help keep hypertension in check. No anti-inflammatories, no aspirin, no blood thinners, no Fish Oil. Ultimately, just try to live your life as normal as possible, and keep your mind occupied with other things that make you happy. Time seems to pass quicker than you might think. Just breathe… you’re not alone. Take care.
Hi thank you for your response!I hope your AVM is gone by june.Are these seizures as terrifying as they sound?
I try my best keeping myself busy but the thoughts keep coming to my head everytime I’m happy.
So you check the size of your AVM once a year ? And do they give you percentage?
Thank you very much. The seizures aren’t fun, for sure. They last about a minute or so. I had right side hemiplegia, so the shaking is all right side. Fortunately, I was home both times, and my husband was near. Please know it might not be from the radiation. It’s quite possible it wouldn’t happen to you.
Regarding the AVM, they do check the size, and any changes. I go to a teaching hospital, and an entire team of people are looking at the results. I feel good about that. I haven’t been told any percentage, but I was told that at the 3 year mark, which is June, they will schedule an angiogram to confirm it’s gone.
Thank you for sharing. I had an AVM rupture about 15 years ago. It affected my whole right side. It was to risky to do surgery for me. After a few weeks I regained my strength on my right side. I was sooo happy. My doctor suggested Gamma Knife to prevent another rupture. It was the only opinion. Of course, I was scared and I agreed. It did solve the problem with the AVM but a few months after the Gamma Knife I lost the strength on my right side. I have learned to deal with it but I wish I would have got a second opinion. I’m 37 now and still dealing with the swelling and scarring tissue in my brain.
Anjela
Hello,sorry to hear about your struggles.
If you didn’t get gamma knife you could bleed again right? When you say swelling does it hurt ? How does it affect you?thank you for your response
Yes, it could have bleed again. That was the positive part. The AVM is not active anymore. I felt like my doctor was to aggressive with the radiation though. The necrosis from the radiation caused my paralysis my on my right side not the actual hemorrhage. If you have more questions feel free to ask. I wish I asked more questions.
When you say paralysis you can’t move your arm or leg ? Do you have like pain?
I can move my right arm but I can’t use my fingers. I can walk but not even. My right leg is weaker.