Well, only 22 days until my brain surgery. Just the fact that there's no longer "months" to count down is making my bones shake. I don't want to do this. I don't want to count down. I don't want to prepare... But I have to, because I can't live this way anymore.
I met with my doctor and surgeon. I didn't like all of what I had to hear. My Epileptologist explained that my brain is constantly injuring itself and he doesn't know why. I hate when doctors say "I don't know". But at least he's being truthful, and not lying or "sweetening things up" like many of my past neurologists. He said that the surgery is the only thing that will stop this mess from spreading.
The surgeon was wonderful. I loved meeting him because I could easily tell how experienced and educated he is. He was very concerned about my happiness as well as my family. He stayed for as many questions as we needed him to stay for, and didn't interrupt or hush us. Definitely a great man and I couldn't ask for a better surgeon.
He explained the surgery, and like my Epileptologist mentioned, they want to take our more than originally planned. Originally, the temporal lobe was all that was going to be resected. (Left Temporal Lobectomy) However, my case is more complex and serious and they would like to remove occipital tissue, and part of the left hippocampus as well. I feel like I'm losing my whole brain.
I am most likely going to lose vision in my right eye. I was so upset when I was told this, being an artistic person whom is constantly using her eyes. However, the surgeon is hoping I only lose about half of the vision in that eye, because it will be peripheral and hardly noticeable.
I am for sure going to lose memory. Not events, but names of things and such. I will have a hard time remembering tasks, so the surgeon has instructed me to start using lists (Ex: grocery list) to get used to the idea of having to use one. He also told me that I shouldn't go through with this surgery if I want any sort of important profession that requires a lot of memory. Such as being a doctor or a teacher... I wanted to be a therapist for people with Epilepsy, but I guess that won't happen now.
I may need speech therapy or other therapy after surgery. A lot of my language is in nearby areas (my brain rearranged itself to attempt and fix its damage) and there's a chance that ultra-tiny pieces may get removed that mess with those skills of mine. The surgeon said that I should count on having issues with conversation and... Unfortunately... Writing. So much for being a blogger?
He did tell me that my art skills will not be messed with. This is the only thing I am happy about as of right now. It seems like I'm losing everything else. But I just can't keep living with the seizures. They're keeping me from doing anything. I'm just sick all day lately.
From what you're reading, I'm sure you've guessed I had to do a lot of weighing as far as pros and cons of getting the surgery and not getting the surgery... and I did. I asked the surgeon so many questions I was worried he'd leave. But he didn't, and was very thoughtful. He assured me that his intentions are to rid me of all of my seizures, and he feels like I have a chance of being seizure-free.
When he told me that, the sight in my right eye or the ability to blog was worth less than a penny. Of course, I'm hoping I don't lose that sight or my blogging skills. And there is a chance that I won't. My surgeon said it's better to count on losing these things, so that if I do lose it - I expected to. And if I don't lose it, oh well, I got lucky. I like his way of thinking.
I did have to lose one thing for sure, but it is only temporary...
My hair. I chopped a little over 10 inches off. Not really happy about it being gone, but I have to live with it until after surgery. The left side is about 1.5 inches long to help with the incision. The right is longer just because I wanted it that way. It's probably going to be shaved on the left side after surgery, but the "cute little haircut," as my darling Rafael calls it, on the right side will help keep some of my dignity. I may shave it off entirely, because the doctors are encouraging that. But I have to do some thinking before I go through with it.
Until next time, God bless! Keep me in your prayers because I truly need them right now. AND, if you'd like to donate for my surgery, I have set up a fundraiser through Tastefully Simple. ALL proceeds are going to the surgery. Orders can be made through February 4th! http://www.facebook.com/#!/events/560387703989096/571321482895718
You're a very brave woman, Mandy. As a retired clinical neurologist, I can understand how you and your doctors have considered your current status of very poorly controlled seizures. If your doctors believe there's a good chance of improving seizure control, then you have made the choice that is best for you. You know what life has been like up until now. You've made a considered and intelligent choice. As far as the predicted possible deficits post-surgery, we will all hope that they're not as bad as you are preparing yourself for. You have your world of followers supporting you.
ReplyDeleteGo for it, Mandy!!
You are in my thoughts more than you can even imagine. Your situation also makes my constant complaints about the high cost of my medication (that has been controlling my seizures for 5 years) seem so trivial. My current doctor provided a bit of information on surgey as an option several years ago, and once I found out the details I was scared out of my mind. You are incredibly brave and I wish you and your family the best. I hope that this operation gets rid of the seizures once and for all.
ReplyDelete