deepjuju: (Default)
[personal profile] deepjuju
FirstBorn needed a wheelchair through the airport because her angiogram site bruised. She coughed (under anesthesia) during the procedure, so she suffered more bruising this time than she did last time, and her bed was soaked in blood, which bothered her. She came out of anesthesia ready to leave, leave, leave, but otherwise suffered fewer ill-effects than last time. I really liked the anesthesiologist. He reminded me of a friend's fiancé, and Merlin and I giggled about it the whole time he was talking to us.

Thursday was all doctor appointments all day long. It was exhausting, but really encouraging. I have a much better (though probably still incomplete) understanding of the procedure. Most of my fears stemmed from what I had read online about side effects affecting the normal brain tissue around the AVM treatment site. I had envisioned the procedure as a concentration of lasers on a sphere (marble) of the damaged area that included some normal brain tissue which might be adversely affected. In essence, I was afraid that we were killing off normal brain with damaged areas and hoping that that part of the brain was being underutilized anyway. When they kept talking about super-sensitive MRIs and angiograms meant to determine the important neural pathways, I thought it was for the purpose of limiting the size of the "marble" in order to treat the larger area possible without damaging necessary systems.

I was thinking too big. They weren't treating a single sphere, but rather a handful of tinier spheres poured into the irregular shape of the damaged veinous network. Like bb's. The first treatment took 152 minutes because they were planning the dosage level and placement of each sphere along the vein's pathways.

The neurosurgeon helped me understand the method better; then the radiologist said there was a 50 to 60% chance that treatment would obliterate the AVM, which we had not thought possible because of the size and depth. When they did the procedure a week ago (last Tuesday) and they came out to tell us that they had broken it into three areas and that today's treatment would last more than two hours. Will and I looked at each other and realized: They mean to treat THE WHOLE THING. They are rightfully cautious about anticipating a 100% successful result (it will be three years before we know, and it will depend on how her body works on the irradiated areas), but they are absolutely trying to take this thing out in its entirety. I couldn't believe it. I feel like crying just thinking about it.

So the next treatment is in August. It will be less complicated because they will not have to do another angiogram or treatment plan. We have met all the doctors. We are hoping for a six-day-trip instead of a ten-day-trip. This trip cost us about $4500, and we haven't been billed for the medical services yet.

We are watching for side effects and holding our breath against a bleed. Sometimes the normal brain swells because of the collapse? scarring over? of the irradiated veins. Some people have reported bleeds after treatment, though I understand the two are not really directly related.
For now, she seems fine, just a little stiff and sore from the angiogram. The two little pinholes where they screwed the frame to her head to keep the lasers in place are healing over. I'm getting ready to move to Michigan, and BetterHalf is getting ready to pack up the house and follow two months later, and the kids are anxious for summer.

Date: 2012-05-22 06:40 pm (UTC)
fanofall: avatar of me (Default)
From: [personal profile] fanofall
I am almost in tears reading this -- I am so overwhelmed *for you*, I can't even *imagine* what you're feeling. Hugs to everyone ever, and please please please let me know if you need anything (casserole? wine? yarn?)...

Date: 2012-05-22 07:46 pm (UTC)
girlpearl: from a valentine by ee cummings, an elephant in a heart with "LOVE" above (lovelephant)
From: [personal profile] girlpearl
Welcome back, and thanks for keeping us updated too. I hope things continue to go smoothly and that they're able to remove as much as they hope to. Much love to you all.

Date: 2012-05-22 08:03 pm (UTC)
panisdead: (Default)
From: [personal profile] panisdead
I'm SO relieved to hear things went well. Take care and thanks for keeping us updated.

Date: 2012-05-23 06:06 pm (UTC)
melusina: (Any silken_shadows c&h hugs)
From: [personal profile] melusina
I'm so glad to hear that they plan to treat the whole thing! Y'all have been in my thoughts so so much.

Miss you guys a lot - when can you come to dinner?

Date: 2012-05-24 02:17 am (UTC)
melusina: (Default)
From: [personal profile] melusina


deepjuju: (Default)

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