I am third time over. Also had a craniotomy too.
Oh no that sucks. Are you currently waiting treatment?
Yes. As soon it was found, I set up a consult with Duke neurosurgury. My wife and I recently, this past week I think, met the Duke Dr. We will be doing another round of gamma knife. That makes 3 times for gk surgery, 4 spots on the brain.
Oh I’m sorry you’ve had to go through all that. I found out mine had returned a year after my craniotomy. Looks like I will probably go for radiation as well, as I am less keen on another surgery, however they are concerned that it may come back again considering my age. Were all your AVMs in the same area?
I’m so sorry you had to go through with that! For me it was trial and error. They found this AVM after I requested a second opinion. Sure enough, Duke Drs. Did an MRI and happened upon an AVM in thalamus section. Previously I had AVMs in frontal lobe and other frontal lobe. Still had three ruptured, so it’s trial and error. I’m just thankful to be alive!
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I realized I hadn’t updated here. I have had since 2020:
- A stroke
- Vision loss
- Possibly another bleed
- Wrote and published “Malformation: when bad things happen to the right kind of people” (check profile or mymalformation com).
- Got approved for disability.
- Learned to walk with seeing eye cane.
- Traveled to Donegal, IE to find my ancestors and tracked my DNA to find a little area in and around Letterkenny IE and McMonagle Stone that my family is from.
- Had one child graduate high school and move to college.
So basically nothing going on hah! Blessings as you continue!