Arteriovenous Malformation (AVM) survival and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

I'm a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I'm also interested in reading about studies and research on AVMs

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

Colleen Young, Connect Director | @colleenyoung | Feb 20, 2018

In reply to @skielley "Not quite sure how you know my daughter. Would not mind talking too you either." + (show)

Hi @skielley, I believe that @loulouburke was responding to @feroza and asking how her/his daughter is doing.

Skielley, do you or your daughter have experience with Arteriovenous Malformation (AVM)?

skielley | @skielley | Feb 20, 2018

Not quite sure how you know my daughter. Would not mind talking too you either.

loulouburke | @loulouburke | Feb 20, 2018

In reply to @feroza "Hi I have a 13 year old daughter that has been diagnosed a high risk avm..." + (show)

Hi there:) I just read this and was wondering how your daughter is doing. I found my AVM only after it had burst when I was 21. I would love to talk to you.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2017

In reply to @feroza "Hi I have a 13 year old daughter that has been diagnosed a high risk avm..." + (show)

Hello again @feroza

Have you had the opportunity to read the NIH article yet? It looks like a multidisciplinary approach is the best way to treat AVM.

Have you tried getting a second opinion yet? Perhaps that would give you more confidence to step out and make the right decision for your daughter's treatment.

Teresa

feroza | @feroza | Sep 6, 2017

In reply to @feroza "Hi I have a 13 year old daughter that has been diagnosed a high risk avm..." + (show)

Hi thanks for response she's had 3 convulsions over a period of 18 months that's when we did a mri followed by an angiogram she recently went on meds 4 the convulsions so that's in control. She's always tired and occasionally gets headaches.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2017

In reply to @feroza "Hi I have a 13 year old daughter that has been diagnosed a high risk avm..." + (show)

Hello @feroza and welcome to Mayo Connect.

I am sorry to hear that your daughter is at high risk for AVM. When treatment options contain risks, making the right decision becomes a dilemma, doesn't it?

I did find a website from the NIH that does provide some information on treatments for this disorder, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400489/.

Perhaps others in our Connect Community will respond with their experiences as well.

We look forward to supporting you during this decision making process, so please share with us.

If we may inquire, what were your daughter's symptoms that led to testing and this diagnosis? How is her health in general?

Teresa

feroza | @feroza | Sep 6, 2017

Hi I have a 13 year old daughter that has been diagnosed a high risk avm they suggest embolization along with radiotherapy but there are risks involved. Should I just leave it alone or agree 2 procedures. She's taking meds 4 seizures so that's in control but she's always tired and complains of headaches often. Her 1 artery which is deep in seems to be very narrow. This is all new to me please help.

auldcelt | @auldcelt | Aug 26, 2017

In reply to @colleenyoung "Welcome to Connect, @auldcelt. I'm glad you started this discussion on AVM. Here are a couple..." + (show)

It's hit or miss. Some days it doesn't seem like they do anything and others a headache is bearable. My triggers are weather (not much I can do about that) and stress (and I'm teaching myself to redirect that in other ways).

Colleen Young, Connect Director | @colleenyoung | Aug 25, 2017

In reply to @colleenyoung "Welcome to Connect, @auldcelt. I'm glad you started this discussion on AVM. Here are a couple..." + (show)

Welcome back, @auldcelt. How are the additional medications working for you?

auldcelt | @auldcelt | Aug 25, 2017

In reply to @colleenyoung "Welcome to Connect, @auldcelt. I'm glad you started this discussion on AVM. Here are a couple..." + (show)

Since my original response, we've changed up the meds a few times trying to bring the migraines under some control. We've added TRILEPTAL and, VISTARIL to the mix.