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AVM Survivors Network

Newbie here

Hello. My name is Ron. My wife had a rupture in her cerebellum May 8 2013. She spent 7 days in ICU and a month in rehab. She is doing well. You would never know she had a stroke. She does have some balance issues but nothing she can’t overcome.

Jump ahead to yesterday. She had an angiogram and it showed an AVM less than a cm. we have to see a neurosurgeon to see what’s next.

I came here to get information on surgery and gamma knife. I’m hoping we just didn’t not have to wait out a ticking time bomb. I’m scared, scared of surgery and what recovery means for it.

I just feel lost and am searching for answers.

Hi ron, I cannot advise on surgery or gamma knife as I haven’t undergone them myself yet. I’m hoping I will get gamma knife in the new year as surgery is not an option for me. It is a really scary time for you and your wife, I understand that all too well. I was only diagnosed myself about a month ago and I’m already frustated by the pace of movement when dealing with avms. Having undergone the stress and treatment for one avm that bad enough but to find another is very rare and unfortunate for you both but hopefully because the first one ruptured they will move quickly with the new one and treat it quickly. I wish you both well.

Is surgery not an option due to the location of urs? I wish u the best of luck! I fully believe that things happen when it’s meant to happen, even though not always when we want it to but stay strong.

We are not sure of anything yet. We have not met the neurosurgeon

Hi, Ron. I'm so sorry to hear you and your wife are going through this, it's not easy. The three options for treatment are gamma knife, which can only be used in some cases and does not work on larger AVMs, surgery, and embolization. Oftentimes surgery involves embolization to try to reduce the size of the AVM and reduce the risk of a rupture during surgery before actually doing surgery itself.

No two ways about it, contemplating brain surgery is scary and the surgery carries risks. Most times if the AVM is removed via craniotomy completely, the person is cured. However, there have been cases where it has regrown. Most of those cases are in children, but the occasional adult will have an AVM regrow even if it's completely removed. Which is exactly what happened to me.

If you opt for a craniotomy, be aware that the skull will not be as strong as it was previously because in adults, the skull will not knit back together the way it will with children, so contact sports are a no no for an adult who's had brain surgery

Embolization carries a risk of having to wait quite a while after the procedures are completed to know if they were successful or not, and there is an increased risk of bleeding with an embolization to treat an AVM.

Your best information will come from your neurosurgeon who has all the details about the AVM and can advise you on the risks associated with each treatment. Hang tough, make sure you have a good support system in place for yourself and for your wife (including professional counseling if it's available), and if you aren't sure you like what you're hearing, be sure to get a second opinion!

Ron, this site also has some information on gamma knife treatment. If you click on the "resources" link at the top right hand corner of this page, and then on the resources page look at the left hand side links. The second one down is about all about gamma knife surgery for brain AVMs and may help get you a little more information before talking to the surgeon.

Ron, you may wish to join the cerebellar avms group to connect with others who have avms similar to your wife’s. Just click “Groups” at the top of the page to find it.

Hi Ron. I also have an AVM of the Cerebellum but mine is quite large. So far it is unruptured and hasn't caused me many problems. It was first 'discovered' when it caused me to suffer Recurrent Hydrocephalus when I was 14 (I am 41 now). I know from this site that lots of people think of AVMs as 'ticking time bombs'. Personally I don't feel that way as none of us knows how long we have got here anyway. I have always felt that knowing about a medical problem is better than suddenly suffering a deficit due to an unknown one. But maybe that is just because I have known about my AVM for a long time, I'm not sure. Anyway the one thing I do get annoyed about is my balsnce. So I can identify with your wife's balance problems. Mine aren't severe but I am very clumsy, struggle to walk straight and often lose my balance when standing. Surgery isn't an option for me either. But my Neurosurgeon has m mentioned Gamma Knife. So far I have elected not to go ahead cos I am scared it would make things worse for me. But I think I would be tempted to proceed if I had already had a bleed. Best of luck to you both.