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auldcelt
@auldcelt

Posts: 5
Joined: Dec 16, 2016

Arteriovenous Malformation (AVM) Survivors and side effects

Posted by @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

REPLY

Welcome to Connect, @auldcelt.
I’m glad you started this discussion on AVM. Here are a couple of links to research being done:
– About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
– Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

@colleenyoung

Welcome to Connect, @auldcelt.
I’m glad you started this discussion on AVM. Here are a couple of links to research being done:
– About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
– Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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My surgery was in 2013 May. I’m seeing a neurologist and I’m being treated wth generic cymbalta. On bad pain days I use Cambia

Hi @auldcelt my name is Kari, I have a small AVM that is being monitored. Thank you for posting about your surgery. Would you mind me asking if your AVM was found incidentally or did you have symptoms? I also have headaches, called cluster headaches they are a form of migraines. I use at home oxygen and it helps if I use it right away. It is high flow oxygen with a rebreather mask. I wonder if it would help you also? It would be worth asking your neurologist.

Sorry for the delay in responding Kari, I honestly forgot I was a member and only logged in today after seeing a note to update my profile.

My AVM was found by accident after a severe bout of vertigo. the ENT wanted an MRI to rule out other possibilities and voila the AVM was found. Ending in successful surgery. The reason for my surgery was an aneurysm that had formed off the AVM and there was concern it would rupture.

@colleenyoung

Welcome to Connect, @auldcelt.
I’m glad you started this discussion on AVM. Here are a couple of links to research being done:
– About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
– Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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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.

@colleenyoung

Welcome to Connect, @auldcelt.
I’m glad you started this discussion on AVM. Here are a couple of links to research being done:
– About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
– Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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

@colleenyoung

Welcome to Connect, @auldcelt.
I’m glad you started this discussion on AVM. Here are a couple of links to research being done:
– About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
– Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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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).

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.

@feroza

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.

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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

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.

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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.

@feroza

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.

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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

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.

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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.

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

@skielley

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

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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)?

No we do not

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