I was diagnosed with an AVM in my left occiptal lobe on July 9, 2020. I had an excruciating migraine on June 17, 2020 and fought through headaches for a week before calling my primary care doctor. She assigned me a pair a migraine medications and requested an MRI for me. I got really lucky. Initially I was not to have an MRI until September because the clinic was so full. However, someone rescheduled at the last minute. I was able to get in on July 6 to be scanned. After finding out what was going on with my head, I was to see a neurovascular surgeon on July 14 about other tests.
I buckled down and started doing as much research as possible on treatments, what they meant, survival rates, things to watch for, everything. I contacted a dietitian to get my blood pressure under control and get my weight down to lower my risks. I learned in reading the AVM forum boards to be wary of doctors who only preform 1-2 AVM craniotomies or embolizations a year. Most people who go with these docs seem prone to having really bad outcomes, so I put that in my “red flag warning list”.
On July 13 I had a hemorrhagic stroke and ended up going to the ER and staying over night in the stroke ward. Luckily, I had very few lasting side effects from the stroke. I have a bit of a tremble in my right hand, which can drive me crazy when drawing. I learned that symptoms of ‘panic attacks’ and ‘anxiety’ that I have lived with for most all my life, are actually focal seizures. The ER visit ended up forcing me to reschedule my appointment with the surgeon. It did however, let me get all the tests needed for diagnosing the AVM that I would have had to do over a prolonged period of time otherwise. So, a CT Scan, an Angiogram, and an MRI later, along with a bunch of blood panels.
I ended up meeting with a Gammaknife surgeon in my area who finds my case “fascinating”. That is not a reassuring term to be used with someone who has a messed up bloodvessel in their brain. She did caution that I should be wary of any surgeon who immediately wants to open my skull.
I make it in to talk to the neurosurgeon I was supposed to see a week after the stroke. He walks in and immediately says, yeah, we can crack your skull open and get this thing out right quick, without blinking. He admitted to having only looked at my MRI, and not the angiogram that pretty much stated this isn’t something the angiogram doc was willing to embolize. Dirty cowboy boots too. Both Wren and I looked at each other and noped out of that guy. He also said he only treated 1-2 AVMs a year maybe and never un-embolized. By the end of the conversation, we learned that most all of my state doesn’t know how to treat an AVM unless its an emergency situation – massive stroke, car injury, things like that where there are going to be permanent disabilities anyways.
I reached out to a well known research hospital connected to a medical university, which is in a different state 7 hours away. They have an actual staff of individuals who specialize in AVM and aneurysm treatment. August 27, 2020, I had to drive 2 1/2 hours to cross state lines to take a teledoc phone call with the chair of the AVM staff for legal reasons. He properly reviewed the MRI, CT scan, and Angiogram and utilized the imaging with Wren and me while we had the consultation to show what was going on in my head and discussed the options of craniotomy and gammaknife with us. He explained how they could use either procedure, what the risk and recovery possibilities were and told us we could call back when we made a decision on if we wanted to proceed with them and with what method. I don’t have the option of sitting back and waiting for another stroke. So, while we were on the call I told him I’d take the craniotomy. Statistically it worked out better in favor of brain surgery over radiation treatment.
Now I’m waiting on the scheduling phone call.
The Mayo Clinic’s explanation of what an Arteriovenous Malformation is.
The Johns Hopkins explanation of what an Arteriovenous Malformation is.
The Toronto Brain Vascular Malformation Study Group information on AVMS.
Gamma Knife or Stereotactic Radiation explained.
At home care instructions for after surgery. – If you can’t tell already, I’m just making a place to come back to when I need a lot of info.
The Aneurysm and AVM Foundation website.
30 minute presentation class on Making Sense of AVM Surgery
I don’t remember where I found this info, but it’s good to have on hand everywhere for anyone who is around me at this point until I can get George the AVM out of my head:
Symptoms of a rupture may include:
• A sudden severe headache (“worst headache of your life”)
• A first-ever or unusual seizure
• Weakness in an arm or leg
• Nausea or vomiting
• Decreased alertness or lethargy
• Vision changes
• Tingling or numbness
• Difficulty speaking or understanding speech
• Difficulty swallowing
• Difficulty reading or writing
• Loss of fine motor skills, coordination, or balance
• An abnormal sense of taste
• Loss of consciousness
After you have phoned for emergency care, you can also try these simple tests to look for signs of stroke:
1. “Smile and show me your teeth.” The “smile test” is used to check for one-sided facial weakness, a classic sign of stroke. If the smile is lopsided, it could be a sign of rupture.
2. “Close your eyes and raise your arms.” If both arms are not raised to the same height, it may be a sign of arm weakness.
3. “Repeat after me: ‘Don’t cry over spilled milk.’ ” Ask the patient to repeat a simple sentence to check for slurring of speech, another classic sign of a stroke.