I’m 28 years old. My avm ruptured twice once in Oct 2013 and again in Feb 2017. Surprisingly no damage has happened even after the ruptures. I don’t have any symptoms or troubles due to having this avm in corpus callosum region. I had severe headache during those ruptures and after the ruptures happened I was back to normal without even a slight headache or after affects.my neurologist suggested gamma knife as an treatment option.
My mom passed away due to cancer few years ago. I do not want to undergo gamma knife as it might up my risk of cancer.
I have 2 kids of ages 2years and 3months old. I don’t want to undergo any treatment as I have read that in many cases people started developing side effects after they got treated. Please help me out with your opinion. Should I get it treated or leave it as it is?
That is only a decision you can make based on the information you have; personally I think you’ve been lucky having 2 ruptures and not having any permanent damage.
I have had one rupture and it almost killed me and I have a significant number of deficits because of the rupture. But you have to make the choice that you are most comfortable with knowing the risks and rewards.
I agree with Mike, it’s a completely individual decision. I had a bleed and gamma knife 6 months later, I wanted to avoid another bleed and a craniotomy presented a fairly high degree of risk vs. gamma. I met someone with a left temporal AVM like mine and the recommendation was do nothing, in my case wasn’t even a consideration. Gather as much information as you can, look at the risks and be at peace with the decision. That is the critical part in my mind,I’m completely at peace with my decision and happy that I recovered well enough from the bleed to make it. Take Care, John.
This is my experience that includes the Gamma Knife.
I was lucky to have had my AVM detected by chance. In the meantime, I never had any symptoms. In 2017 I went through two complex surgeries of eight and seven hours each: 20 embolization coils implanted in the first, and a second one of onix glue embolization. After them, I have a remnant fistula left with the possibility of recession, but my chief surgeon suggested that Gamma Knife be performed in order to resect and eliminate any type of residue that might involve the risk of AVM.
My last operating session was Gamma Knife and lasted five hours. Three months later I had a new CT scan to check the postoperative evolution. There is still some of that fistula, but auspiciously for me, I have been given a date for a new CT scan control in a year.
Never, not even before the first operation and after three interventions have I had any symptoms. I would undergo the same surgical treatment again if necessary.
I am 75 years old and, in spite of the circumstances reported, I still work daily on tasks that demand a lot of concentration and constant use of memory.
Naturally, each one makes the decision that his or her criteria indicate best, and I hope that yours will help you to resolve this trance.
If I were you I would not do the GK. I was diagnosed February of 2012 with a left temporal lobe and was basically rushed into GK, like it was so detrimental it needed to be done. It was a horrible experience and it has made my life hell with the side effects. Headaches that just will not stop. If only one of my doctors would have suggested let’s just watch it, that’s what I would have done. You will have to weigh this out, but knowing you have young children, if you were to end up like myself those kids are going to lose you as the mother they know and love. I know it’s risky, best wishes to you and your family!
Thank you so much Breeze. I am giving myself time to get any sort of treatment for the sake of my kids. I don’t want to ruin their childhood because of my treatments, hospital visits and the after effects of any treatment.
I’m planning to not take any treatment for the time being and have fun with the little ones. And live like there is no tommorow.
You are more than welcome. After reading your post I felt like I needed to inform you about my experience and hopefully prevent you from having something like it.
I think you’re making a very smart decision. Enjoy your little ones and I wish you nothing but the best!
I had my AVM in 2002 , I was told to get an MRI every 5 yrs to follow up on it. I never had surgery. My suggestion would be to get an MRI in 3yrs just to see what’s going on.
One thought - Is your doctor simply giving options, or is your doctor saying that it’s urgent for you to do something?
Another thought - there are risks either way. If you do surgery there are potential risks. If you do nothing, a rupture could have tremendous risks. Praise God you had no side effects to your ruptures. My husband on the other hand was in a coma for months and lost just about everything bodily…though coming up on five years I am finally about to take him home from long term care. We all have opinions to give based upon our individual experience. I’d say if we only knew - MAYBE we could have done something to prevent this great disability. But had we known we’d be in the state of so many of you who fear the potential risks of surgeries and treatments. At the end of the day, you have to get as much medical counsel as possible…and pray a lot, and have peace (like someone mentioned already) with your personal situation which involves your own life situation. I don’t know if my husband would have chosen surgery or not had he known he had an AVM. Could he have known the future would lead us here - he’d have risked it for sure. But we don’t know the future. Only God does. And it’s different for everyone. So get lots of counsel, and pray a lot until you feel peace with your decision.
On monitoring regularly, I have Chiari and have thought the same thing as I am afraid of the surgery - just have it checked periodically by MRI or CT scan. But with the concern for cancer - everyone on this site who’s been through multiple scans should check their heavy metal levels and consider treatment from a natural doctor to remove the heavy metals. My husband had so many mri’s and ct scans I can’t count, and his levels were super high.
Hope this helps some way. Said a prayer for you.
Hi Smitha. I know exactly where you are coming from. I have a large AVM in my Cerebellum. It had never caused me any symptoms but in 2016 I had a stroke mimic which my neuro is sure was caused by my AVM. I have never had any treatment as I suffer so little day to day and don’t want to make things worse for myself. Also the centre of excellence here in the UK thought it was too risky due to my AVM’s location. However things have moved on and my neuro is now looking to see if GK may be an option for me. I’m still worried about it though. Like you I have two kids - 14 and 10 now. I wouldn’t have considered treatment when they were younger just in case. But now they are a bit older and a bit more self-sufficient I feel a little more relaxed about that. All the best Lulu x
Hi there my avm bled in 1979 when there wasn’t any treatment as such and I was symptom free apart from focal seizures for 20 years. My kids were 10 and 12 at the time when I was given the choice purely by accident for gamma knife treatment at Sheffield. I asked my GP about exercising after 20 years and did I still need to be concerned and found myself referred back to a neurosurgeon. Decided to have it done as it was R temp lobe and now it’s gone after 2 treatments. I can understand yr reluctance though. I just ignored mine for years.
You’re dodging bullets day by day. Because you have children, you should be even more concerned with your long term health (read: chances of survival). You should strongly consider getting treatment. Many people point to treatment as being a “personal choice” but, in your scenario, there are other people who would definitely vote to keep you around at all costs.
Yes, gamma knife may slightly increase the chances of getting cancer, but it will greatly increase your chances of living to see your children grow. IMHO you owe it to your kids to do what is best for ensuring your long term health.
Doctors are experts at assessing your personal risk-reward profile based on actual data, not just gut feeling. Listen to them.