We (Tommie and I) leave on the 22nd. Mere is staying with the girls. We can't keep uprooting them. As much as I want her there (and she wants to be there) we can't put what we want before the girls. They need SOME stability right now. Their lives have been turned upside down over and over again.
I have a myelogram scheduled for the 23rd and surgery or blood patch or whatever on the 24th. I am still waiting to get all the details. The scheduler called me last week to schedule everything and I asked her if they were going to observe me in the hospital overnight after the myelogram since I had a seizure after the last one. She wasn't sure and put me through to the NP to ask my questions. I'm still waiting to hear back...........
Which leaves me plenty of time to ruminate about myelograms and seizures. I did some research and it turns out that the chance of having a seizure after a myelogram is 0.15%. Yes, you read it right....0.15%! Why can't I beat the odds at a casino or the lottery? I don't want to be the patient that has the rare complications, this is not my goal. I did find out that the propofol they used to sedate me is sometimes associated with increased seizure risk AND it was the only thing different about this myelogram and the 600 others I have had. I also found out that being super hydrated will decrease the nausea and help the dye move through your system quickly. Oh yeah, and putting your head up after a myelogram so the dye can drain away from your brain (I always lay flat because it usually feels better to be flat) will also decrease the tiny chance of a seizure. So my plan is no sedation, drink water and gatorade like crazy for the 24 hrs before the myelogram, and sit up after the myelogram. The only one of those options that doesn't sound painful is the water/gatorade part. I am also still on seizure meds which should also help.
When all of this started, a seizure was the last thing I was worried about and now it is at the top of my list. I don't remember the seizure, I just remember the fear and confusion as I started to wake up and the macerated tongue. I watched some grand mal seizures on u.tube and really felt like I was going to be sick. I. don't. want. to. do. it. again. I'm not afraid of dying or even having physical limitations but the thought of not having me, MY thoughts, MY brain...that does scare me. I haven't let myself stay in fear for very long, but this time I'm having a hard time getting away from it. I've heard it said that you can't have fear if you have faith. I guess my faith is starting to wobble....at least today.
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5 comments:
Thanks for the continued updates. You, your family, Tommie :), Dr. S and your entire medical team are in our prayers. We are all by your side now and we'll be there when you cross that finish line.
Let's say.....NOT to seize. I mean if you're giving me a choice. :)
Can they move your surgery back to the 27th ? We'd love to stop by and see you.
hugging you. breathe in. breathe out. you have a game plan...now just give it over to someone bigger than you.
love,
rae
My father is epileptic. when I was growing up in California, my best friend was too. Seizures suck but they happen. I am going to hope that they just don't happen to you.
You probably know this, but dilatin is not something you want to go cold turkey on. Quitting the medication without being weaned will increase your chances of having a seizures. I know this because I have a funny little seizure story that I will share with you sometime.
Anyway, I hope things are good for you. I think about you a lot and I am glad you keeping us updated.
i just wanted to send you strength as the big day arrives. here's to hoping this is the LAST one! i believe strongly that you can have both faith and fear, both seem appropriate, especially under the circumstances!!
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