September 23 will mark 10 years since the first symptoms of my TLE began. In those ten years I've had doctor after doctor, test after test, medication after medication, ER visit after ER visit. In all of that, ALL of my tests have come back either clear or inconclusive. Symptoms pointed to right temporal lobe, but nothing ever specific.
Until now.
Two weeks ago I had a PET scan, and today the follow-up with the epileptologist. He showed me the images on his screen; the colours show what's happening in the different parts of the brain... "see how over here it's green and orange, and over here, it just goes dark?" That darkness tells us where the problem is.
It wasn't a surprise--it was exactly the area that we were expecting it to be. But for the first time in ten years, now I'm seeing it on the screen, in technicolour. Rather, I'm seeing the darkness where there should be technicolour.
He's still talking and I'm just staring at that dark spot on the image, and a huge wave of emotion comes over me. After ten years, it's suddenly concrete. I can SEE it. I start crying.
His response? "Why are you crying?"
He hands me a tissue and keeps asking me why I'm crying. I said, "because that," gesturing to the image, "is my brain, and it's broken."
What followed was a lot of:
"Stop crying"
"Be positive"
"It's kind of an insult to me that you don't believe I can help you" (!!)
"I'll refer you to a psychiatrist--you might have depression"
and so forth.
I told him that it's not about him, and I also said that it's normal for people with chronic illnesses to be emotional about such things. But he wasn't hearing it.
"Be positive."
Ok then... I'll just be positive about my incurable neurological disorder.
Thanks doctor.
Anyway....
So the darkest spot is the front of the right temporal lobe, specifically a spot called the "temporal pole". Also impacted are the amygdala and (to a lesser degree) the hippocampus on the same side.
According to the epileptologist, the PET scan is not actually showing damage (directly) but sugar uptake(? I don't really understand this part). The way he explains it is that those areas of the brain are simply tired and so they aren't working at the rate they should be. And they are tired because the ongoing seizure activity wears them out. So the PET scan doesn't actually show a lesion or tumour or something (like an MRI would) but it shows that those areas aren't functioning the way they should... in his words, because they're too tired from having seizures all the time (even when I don't necessarily feel any seizure activity). But since the location of the "tired" spots match exactly what we expected based on everything else (symptoms, "inconclusive" tests, etc.), it tells us what we want to know.
He thinks it's all great news.
I think it's good news from a diagnostic perspective. It gives us some more proof and guidance. But looking at those images still tore me up.
Meds
I'm still increasing the new one (Cenobamate), have fully come off of the Brivlera, and have just started decreasing the Clobazam. It will take 8 weeks to get completely off of the Clobazam, so I will see the specialist again in November and see how I'm doing.
Emotional Support
After my appointment I was so upset that I couldn't even be in public for the walk home without being the crazy crying girl walking down Lonsdale, so I veered off to a little park and found a quiet place to sit and call a friend (thank you Liza).
While I was sitting there, a heron flew in and was poking around the pond, so here is my emotional support heron:
Annual Self Care Day
As I mentioned, September 23 is the anniversary of my first symptoms, and years ago I turned it into my annual Self Care Day, so this year will be no different. Plans still being determined, but will likely involve a massage, lunch, new book, some shopping... we'll see!
Until next time...
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