Arteriovenous Malformation (AVM) Survivors and side effects

Oh, no!!! Would love to know the place that did this! Doctors, etc. and you went to Mayo, too??

Hello my name is Heather. 10 and a half years ago I found out I had a temporal AVM because I had the worst migraine ever and I had a ct in the ER. I was sent to a specialist and because it was so large they had to do 2 separate embolizations. The first one went great but the second one a couple weeks later went bad. The catheter got stuck by the glue (onyx) that they use and I now have a catheter entrapped from my groin to my brain for the rest of my life. A day or so later they had to then remove the AVM, which was not in the plan. That night after my 3rd surgery I had a stroke because my vein closed in on the catheter and I was losing oxygen to my brain. I spent 10 days in the ICU and had to learn after that how to read write and speak again. I now suffer for the past 10 years with horrible migraines and numbness constantly and I am on lots of meds. I also had to have a 4th brain surgery because they missed a spot of my AVM. I am still trying to find an answer. I have even been a patient at Mayo Clinic.

No we do not

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)?

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

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.

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

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.

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 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.