Your advise

Dear Parents. I would like know of I have made the right choice of not treating my daughter's avm. The avm was diagnosed when she was 8 years old and she is now 12. The avm was diagnosed accidentally when we brought her to see a paeditrician as we saw some weaknesses on her right limbs. She an angiography done that confirms the avm and since then had annual MRI just to check if the avm changes or not. The avm is considered a "giant" and it is a grade V on the S-M scale.

A doctor proposed radiosurgery and we had been putting it off as we thought that she is ok and we are unsure if the radiosurgery would make her worse. She had severe headache on three occasions but no bleeding is suspected. It is really, really very difficult for my wife and I to make a decision whether to have our daughter undergo radiosurgery. How did you make your decision?

First, you have my prayers in trying to reach such a tough decision. I’ve watched both my wife and my 19 year old son go in for brain surgerieS (that’s right multiples for each!). I think it was harder on me watching my son go in than my wife…

At age 12, if you aren’t already, I would start including her in your decision process. I wouldn’t give her total veto power, but help her guide herself toward what all of you think is best.

I’ve very skeptical that don’t nothing is a good approach. Technology is changing all the time–when Chari’s AVM first showed up about 1990, it was large and she was told by 2 drs, go home and live with it–too large to operate, though we did do radiation. Ten yrs later, Drs at Stanford said “come on down and we’ll fix it.” It took multiple embos, radiation, and microsurgery, but her AVM is GONE.

I would hope for the same for your daughter.

As a minimum, I would seek a 2nd opinion from a top notch place. Be aware you might get conflicting opinions. Then I would sit down and review the pros/cons of each and make your decision from there.

All procedures have some risk and there is risk of collateral damage from radiation as well.

I wish you well!

Ron, KS

My daughter had a bleed when she was 9. One day she was fine and we had no knowledge of the AVM, and the next she had a bleed. There were no other symptoms in between. Our surgeon didn’t really give us an option “not to treat” because of her age, and that she had already had a bleed. There was just about a 100% chance that she would have another one during her lifetime. She made it through the first bleed fine, but the surgeons said she would not be as lucky a second time, in their opinion. It was very difficult making all of the decisions, especially with it being our child, but even if it had not bled, I don’t think we would have ever considered not treating it, if some form of treatment was available. It was just not worth the risk of a catastrophic bleed. In all of the research that I did,I found that treatment of children is almost always recommended, if available, because of the significant chance of a bleed during the remainder of their lives. No one can make the decision for you. I wish you the best as you gather all of the information and reconsider your plan. In the end, you have to just go with your heart. My daughter ended up having a craniotomy to remove her AVM, but it was smaller, and in a good location.

Our situation was similar to Susan and Lindsey’s. My daughter was 9 as well. She had a massive bleed and a month later the AVM was removed. We weren’t offered options so much as just told what she needed. I’m grateful to the neurosurgeon for being decisive because i think it is difficult if not impossible for lay-people to make medical decisions like this. If I had been making the choice I’m certain i would have gone forward with the surgery. She nearly died in my arms on the way to the emergency room and i don’t think i could have ever let her out of my sight again as long as the AVM was in her head. I was more afraid of the high risk of a bleed than i was of the surgery. But her AVM was in a “good” location and although brain surgery is always risky it was much safer than leaving the AVM. Every AVM decision is unique. I hope you are able to make a decision that you are at peace with.

Dear Ron, thanks for the advise. It is indeed a tough decision to make. I have ever since been browsing the internet for all sorts of information so that I can make a better and well-informed decision. Probably the doctors in the US are better equiped to deal with avms like my daughter’s. I did consulted some doctors in Malaysia and you are right I got conflicting views (it’s actually 1 for and 2 against treatment). And I will include my daughter’s view the next time we decide to talk about her treatment. Thanks again.

Thank you. I think I need to talk to the doctors again.

Rebecca said:

Our situation was similar to Susan and Lindsey’s. My daughter was 9 as well. She had a massive bleed and a month later the AVM was removed. We weren’t offered options so much as just told what she needed. I’m grateful to the neurosurgeon for being decisive because i think it is difficult if not impossible for lay-people to make medical decisions like this. If I had been making the choice I’m certain i would have gone forward with the surgery. She nearly died in my arms on the way to the emergency room and i don’t think i could have ever let her out of my sight again as long as the AVM was in her head. I was more afraid of the high risk of a bleed than i was of the surgery. But her AVM was in a “good” location and although brain surgery is always risky it was much safer than leaving the AVM. Every AVM decision is unique. I hope you are able to make a decision that you are at peace with.

Dear Susan. Thanks and I think I need to talk to the docotrs again.

Susan Troop (Lindsey’s Mom) said:

My daughter had a bleed when she was 9. One day she was fine and we had no knowledge of the AVM, and the next she had a bleed. There were no other symptoms in between. Our surgeon didn’t really give us an option “not to treat” because of her age, and that she had already had a bleed. There was just about a 100% chance that she would have another one during her lifetime. She made it through the first bleed fine, but the surgeons said she would not be as lucky a second time, in their opinion. It was very difficult making all of the decisions, especially with it being our child, but even if it had not bled, I don’t think we would have ever considered not treating it, if some form of treatment was available. It was just not worth the risk of a catastrophic bleed. In all of the research that I did,I found that treatment of children is almost always recommended, if available, because of the significant chance of a bleed during the remainder of their lives. No one can make the decision for you. I wish you the best as you gather all of the information and reconsider your plan. In the end, you have to just go with your heart. My daughter ended up having a craniotomy to remove her AVM, but it was smaller, and in a good location.

Hello, I just happened to stumble upon your profile, would like to share my experience with you. I was diagnosed with AVM in 2006 due to a brain hemorrhage and had a second occurance in 2007. My parents took me back to Singapore to seek treatment. The AVM is located at the bottom lefthand side of my brain. I had radiosurgery treatment (Novalis) in early 2008 and so far, i’ve been doing good. I would recommend you to explore other options like seeking treatment in Singapore, since malaysia and singapore are just next to each other (: And also, I would consider myself as being young - turning 18 soon. So dont give up hope! Your daughter has plenty to look forward to! God bless (: