I wanted to blog about my journey with trigeminal neuralgia because I hadn’t found any blogs that really talked about the process, the surgery, what the recovery was like. Sure, I saw people talking about how much it sucked, which scared me, but I wanted more. So I thought I’d be the more.
Now my story is different. But I’ll start at the beginning.
Getting an appointment at Johns Hopkins requires filling out a medical history and symptom questionnaire, to which they take a week to review and determine if you’re a candidate for surgery. If you are a candidate for surgery then they assign you a doctor and then you’re off to the races. The questionnaire process is the longest bit of the entire thing, at least for my case. That and the fact that I went on vacation and couldn’t take the first appointment that they had.
Surgery was scheduled ten days out, which then became a race. Get things squared away at work, preop testing, make sure my house was in order, presurgery MRI, then the day of. It moved at lightening speed, until the day of surgery.
On the way there, and we were about ten minutes away, I received a call that the neurosurgeon wanted me there early. When I got there I was immediately taken back to preop. And that’s where things got shakey for a couple of days.
Johns Hopkins is nothing if not thorough, and when I had my MRI, the radiologists flagged an abnormality and then notified my doctor. What they saw was a possible Arteriovenous fistula and that had everyone in a tizzy. I had never heard of this before, but my awesome doctor discussed what this could mean, and it’s sort of scarey. There was some crying involved.
My neurosurgeon had already been in contact with the vascular neurosurgeon and said that I could proceed with the procedure if I chose, but he might get in there and have to close me back up depending on what he saw. My doctor then said that if I were his sister he’d tell me to not do the surgery and get this abnormality checked out, and that was enough for us.
That was on a Monday. By the time I was walking out of the hospital I had an appointment for a cerebral angiogram that Thursday to see want all of the fuss was about and a new surgery date the following week.
Cerebral angiograms suck. But my came back all clear. The vascular neurosurgeon thinks that the MRI contrast dye had just pooled in my vein making it look like it had a heavy flow.
So it’s now eleven days after my original surgery date and I am back on my way for round two. Fingers crossed.
(Brain surgery requires that you have an MRI 24 hours prior to the procedure. They put these lifesaver looking stickers on your head to provide a road map so that the doctor can match photo with actual head. You get to wear them until surgery. It’s a great trend. Look for it on all the runways this fall.)