How I’m doing – an personal medical history of occurrences and costs up to now. – Oh, and yes, I named my AVM George because I’m weird like that.
A Feather on My Scale book 2 of Gods of Fire – in case I don’t get the chance to finish it. I finished and published The Fire in My Blood in April 2020. I was asked shortly after publishing if I was going to make a second book. So, I started the outlines and some scenes in June before the diagnosis. I have plans of writing one more story to make a trilogy I’m calling Gods of Fire. I realize there is a high risk of mortality for AVM individuals who have had a hemorrhage, so I put this post together as somewhere to quick info dump the AVM diagnosis and let people know more about Gods of Fire if…well, if bad things happen and I can’t finish the trilogy.
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.