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Arteriovenous Malformation (AVM) Survivors and side effects
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
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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?
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.
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3 ReactionsSince 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.
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1 ReactionWelcome back, @auldcelt. How are the additional medications working for you?
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1 ReactionIt'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).
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3 ReactionsHi 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.
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
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.