Syncope associated with AVM?

My 16 year old was diagnosed with her AVM mid May. After the surgeon deemed her AVM inoperable at this time, he referred her to an epileptologist to rule out seizure activity because she faints quite a bit. This doctor ordered an EEG and tilt table test. The EEG was normal. The tilt test, not so much. Today she had an echocardiogram with a pediatric cardiology follow up in about a week. Does anyone else have an AVM involving the thalamus and basal ganglia that has problems with hot flashes and fainting? I feel like these are connected, but don't feel like the doctors are connecting these.

Hi JessiLynn,

My AVM is within the spinal cord tissue from the brainstem down to C2. In Nov. 2011 I bled and since have been left with a host of neurological issues, one happens to be syncope. I've had some tests and such done without a conclusion. In my case the best guess is that it is related to the vagus nerve and my digestive tract. I'm guessing that when my digestive tract is 'working' (which it doesn't do very often or well) it is sending signals for more blood and taking it from my brain. Are the signals being interpreted incorrectly? I don't know. Hope this helps.

Blessings to you.

Thank you for the reply Kim! I have strongly suspected that my daughter's AVM is the cause of her syncope issues, but the physicians want to continue with testing her heart. Our primary care physician has never had a patient with an AVM before, let alone a cavernous one, and actually said that we need to focus on cardiology right now and not worry about neurology until it's time for another MRI. I don't think so!!! Every cardiac test, with the exception of the tilt table test, has come back normal. This is yet another reason that I am thankful for this forum. I would not know where to turn without it.

WOW! I have a thalamus and basal ganglia AVM. I fainted a lot when I was younger. It even started when I was 16. Let me know if you would like to compare medical records.

Hi Melissa! I checked out your page and it looks like your AVM is very similar to Dani's! It is very interesting to me that you fainted a lot as a child as well. When you say that it started when you were 16, do you mean the fainting? This is something that Dani has been tested for since she was 6 years old. Her AVM was found due to an MRI ordered because of debilitating headaches that did not seem to fall under migraine patterns and "fainting" episodes increasing. Dani is now seeing a neurologist at Children's Hospital in Omaha. He has ordered an ambulatory EEG that is scheduled for this next week. We want to be sure that the "fainting" is not actually seizure activity.

It looks like you have been through a lot with your treatments! It gives me hope to know that your AVM is shrinking. It makes me sad though that you have to go through suffering a stroke for treatment to take place. Best Wishes for continued recovery!!!