Have anyone had a radiation therapy for Brain AVM?

Posted by rubyruru @rubyruru, Mar 3 10:14pm

I have been advised to undergo radiation therapy for my brain AVM (3–4 cm in my right hemisphere). Surgery is not recommended due to its size and deep location. In addition, I have a 3 cm aneurysm that my doctor wants to treat with coil embolization. They also mentioned that I have a few vein closures, but they don’t seem concerned about them at this stage.

Doctors talk about side effects easily, but I’d like to hear real stories from people who have actually experienced them. I’m in my mid-50s and, fortunately, have not had any symptoms yet. Because of this, I’m carefully considering whether I should even proceed with radiation therapy for my AVM and coil embolization for my aneurysm.

Therefore, it would be much appreciated if you could let me know the side effects of radiation therapy and coil embolisation and their severity you experienced.

I am so sorry to hear those who have been suffering from AVM symptoms.... I wish you all the very best.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Lisa Lucier, Moderator | @lisalucier | Mar 4 9:31am

Hi, @rubyruru - welcome to Mayo Clinic Connect.

That makes complete sense to want to hear from real people who've experienced radiation therapy for an AVM and coil embolization for an aneurysm. I'm tagging a few Connect members who may have information to share @helenfrances @feroza @avmcbellar @auldcelt @intrepiddoc @lizm2 @levity @loulouburke @echolsleslie @kariulrich.

rubyruru | @rubyruru | Mar 4 5:26pm

Hi @lisalucier,

Thank you so much! I'm very new to this forum, so I really appreciate your kindness.

samanthacarlisle1983 | @samanthacarlisle1983 | 1 day ago

I am in my 40's and I am very scared at this point. I HAVE A VERY RARE blood Vessel disorder. Osler webber rendu
And I've known about my AVM
but was stubborn headed to get it taken care of but I have 2 kids and my body is falling apart Dr's used too tell all the time with most people that has this disorder that I was among the ones that was the healthiest and now I just had my MRI done since 2014 and they used too want to do surgery before but after reading your comment I am terrified. I'm so sorry and I will be praying for you. My email address is sammy.carlisle25@ gmail.com
Please keep in touch with me too let me know what you decide but in the mean time just know I AM PRAYING FOR YOU. Sam

rubyruru | @rubyruru | 1 hour ago

In reply to @samanthacarlisle1983 "I am in my 40's and I am very scared at this point. I HAVE A..." + (show)

Thank you for reaching out to me, Sam. I’m so sorry to hear that you’re dealing with such a rare condition and an AVM, but I’m glad to hear from you, and I really appreciate your kind words.

As for my AVM, I’ve decided to seek a second opinion. My neurosurgeon is a wonderful doctor—he actually encouraged me to do so and even gave me names of other neurosurgeons.

In your case, I assume your doctor has told you they can operate and remove it with confidence, right? If so, I would go for it if I were you. Don’t be scared—your beautiful children would be so happy to see you healthier!

I’m praying for you, too!!
Ruby

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