My brother was diagnosed with ruptured avm.the doctor adviced him to take radiosurgery because the location of his avm is at the interior right middle of his brain.according to doctor open surgergy is too risky and embolization is impossible because of the location of his avm.my brother is only 21 years old.newly grad of mechanical engineering.he had a brighter future ahead of him.im afraid that his life would change after this.how does radiosurgery works?what are the side effects of it?is he going back to his normal life after this?
Welcome Calo. I had a ruptured AVM that was treated with gamma knife, one of the types of radio surgery. I had it 6 months after, it was a long recovery and a long process determining which route to take but the gamma was recommended based on risk due to location. The treatment was 18 months ago, I don’t believe the treatment caused any issues beyond what the bleed did. The thing is the wait while the radiation works, I go back in another 6 months for my second follow up MRI. I have found however that the time is flying. Take Care, and once agin welcome, John.
Thank you so much for sharing your experience.it means a lot.we are still on the process of analyzing his case but we are hoping and praying for the best result.glad to know someone who’s been on this same situation.God bless you more and praying for your fast recovery…Calo☺
I was diagnosed with an aggressive case of AVM that was unruptured but causing brain damage back in May 17. I deferred my final exams for graduation in MEng Chemical Engineering last summer but hope to complete these this summer. I suffered a stroke back in Jan 18 during the embolisation procedure and as a result I am partially sighted. Regardless of this, I have resumed my studies and gotten a job offer from a big engineering company (who are aware of my condition).
My point of saying all this is: your brother’s career may be delayed to give him time to recover following his AVM rupture but that doesn’t take away from his bright future ahead. He may have suffered some perminent brain damage like I do, but he will adapt and will still have plenty to look forward to and succeed in ahead of him.
As for radiosurgery, every treatment option has risk. It seems like my specialist team are leaning towards me undergoing radiosurgery aswell later this year. They have given me a 5% estimated risk of further sight loss (brain damage) for this treatment option. They have however said, they expect this option to have the lowest risk for my case.
The risks generally associated with radiosurgery I am aware of are:
- necrosis (damage of healthy brain tissues caused by the radiation)
- brain swelling (usually treated with steroids)
- small patch of hair loss at site of AVM (most cases grows back)
- a rupture occuring during the treatment period
Happy to exchange contact details via PM if your brother would like someone to talk to who is a similar age / can relate in a way to his situation.
I am 21 now and had the Gamma Knife for the first time 11 years ago (today, actually!). The surgery was 6 months after my right frontal lobe AVM bled. My surgeon thought it was the best course of treatment because of the location of the AVM. After 5 years, the area they treated was gone (although there was swelling the first year), but nothing directly from the Gamma Knife changed any of my symptoms. Other than at the time of the bleed, I have never had headaches from the AVM. I had the Gamma Knife again in 2012 on another area, and my following MRIs showed that it worked.
Wishing you and your family all the best!
Thank you corrine.such a positive person you are.my brother was scheduled to undergo this procedure next month depend on his recovery from bleeding.hoping and praying that no bleeding occurs during this time.the doctor wants the avm to heal to get the specific size of it for the radiation to target.thank you so much for sharing your experience,it really helps a lot.keep you posted on my brother’s situation.God bless us all!
I just noticed something on my brother’s attitude.He got a bad temper this time.He got mad easily.It’s been 10 days after his avm bleed.We are waiting for 3 weeks or so depending on his brain recovery for him to undergo radiosurgery.Im just anxious that the bleeding made his mood swings.Does anyone experienced this kind of changes after beeding?Is he going to back to his normal self when he fully recovered?Thank you again and God bless us all!
Hi. I think it is fair to say that when you have a stroke, it depends completely on what parts of your brain get damaged by the bleed. Your mood is a brain-related thing, so if he has had damage, I think in his frontal lobe, it could affect his mood.
Otherwise, it might be all the other factors of life and his general poorer state of health that is just pushing him to be less patient.
I also had a personality change, but opposite to your brother’s. I went from being really upset pre-bleed to being much happier several months post-bleed. The days post-bleed, I would say, are not a full picture of who he will be for the rest of his life from now on. I don’t remember much of my time in hospital recovering from the bleed, but now almost 12 years later, I feel like my personality is definitely different from pre-bleed but that it has also changed a lot too during my recovery.
My son had a bleed on his 20th birthday on the last day of finals at UCSC last December - his bleed was smaller and he suffered no loss of faculties but because of the size, location, and drainage of his AVM, CyberKnife radiation was the best and, at this time, only option for him. Less than a month later, he received 3 treatments with CyberKnife. We are in the latent waiting period which is trying but he is able to go back to school and is taking one class at a time. He goes for his first MRI since the treatment in July where we don’t expect to see any changes yet - too early. I wish you and your brother all the best and ope he can continue with his studies very soon.
Is your brother still in hospital or gotten back home now? I found after being at hospital for more than 5 nights or so I began to feel restless and agitated. The lack of personal space and privacy made me more irritable. I also found I needed space between having loved ones visit to allow me to sleep and rest. I got fed up of everyone fussing over me.
I think also his situation has all changed really fast: one minute he was fine and he was excited to start work after graduation and now he’s just been diagnosed with a ruptured AVM, a very serious health condition, facing treatment and having life delayed - this is all alot to get his head around. Coping with this change in circumstances may also be making him feel irritable.
@corrine @DickD @Hermione711 @kellycm
He got home now.He stayed 9 days in the hospital.
I think he feel the same way as you did then @corrine .That’s exactly he is now.When he was in the hospital,he always insisting to go home.We keep on reminding him on the things to be avoid so that his avm wont bleed again as we are waiting for the radiosurgery to be done.But he got irritable always.Waiting for the radiosurgery to be done is indeed a torture to us,especially to my mum.
Thank you always for sharing your experinced!It’s very helpful to us especially now that we are in doubts and fears.Pardon my english also,I’m not good.Hope you understand.
I’ll keep you posted on my brother’s journey through this.
God bless us all!
So so glad to hear your brother is finally back home, I found it absolute bliss when I returned back from hospital - having a bedroom to myself, my own bed, quiteness and privacy. I feel your brother should start feeling more himself now he’s returned to home comforts.
Although ofcourse you all will be naturally feeling on edge after this, try to not fuss over him too much to allow him space to rest. My mum was also the one who struggled to cope the most with worrying about me - but I did get irritable when she was hovering around me too much (although I knew it was out of love for me) I didn’t want to be treated as a baby or wounded person. I wanted some normalacy to let me cope with things my own way.
In terms of waiting for the radiosurgery, try to take it one step at a time. For now the focus is on your brother recovering and getting back on his feet. Next step will be radiosurgery. I know there is a natural want to rush things and get them over and done with but even after radiosurgery - your brother will still need time to fully recover and heal from his bleed and the treatment takes time to work to eliminate the AVM. Learning that an AVM isn’t something we can quickly move on from is a difficult thing we all have had to come to terms with. But with time, it’ll get easier and you will gain added strength as a unit too. As @JD12 has said, the time since he had radiosurgery has flown by.
Your english is great by the way, had no troubles at all understanding you
Look forward to hearing how your brother and you all get on,
I wanted nothing more than to go home, too. My dad helped me regain my memory by telling me “escape plans” and having me recite them back to him.
I am so happy that your brother is home! Wishing you both all the best!
Thank you so much for the advice and for sharing what you’d been through.I feel like I’m gaining strenght as I read this.I also shared this to my mum and told her to treat my brother normally.You’re right,maybe my brother doesn’t want to be treated as a baby or wounded person.We will try not to fuss over him.Maybe he need some time.
Again,thank you so much.
God bless us all!
Thank you @Hermione711,I’ll keep you posted on my brother’s journey.
How are you anyway?I hope you’re doing well.
Again,thank you and God bless.
I am doing pretty well! I have actually been chosen to speak at a Brain Injury Survivor conference next month. Please feel free to reach out to me with any questions… I was 10 when I had my bleed.
Mechanical engineer here with brain avm that ruptured and treated with GK! I’m 2.5 years post treatment and still here!
If your brother needs assistance in anyway please contact me!
Thank you Ahmad.I’ll keep you posted.Good to hear from someone who’s in the same situation.
Hope you’re doing ok now.
Calo, welcome to this wonderful group of AVM-ers. In one way or another, we have all been a newbie and as such, we are here to support ad encourage you. I had Gamma Knife surgery almost 3-1/2 years ago for the ruptured AVM in my Cerebellum. Because of the location, Gamma Knife was the only option open for me, as well. I had no significant after effects from the GK. Most of the deficits I had after the rupture slowly improved (memory, balance, coordination, and focus). In time, the fog lifted and life started to make sense again. Your Brother will make great improvements, but he can’t rush it. AVM’s tend to heal at their own pace, not ours. Best of luck.