Surgery Has Been Scheduled!

So my surgery has been scheduled for Tuesday January 3 at 7:00 (I have to be there at 6). There is nothing like have your surgeon well rested from Christmas break!! :) It will take about 3 hours from the time they wheel me back until I'm in recovery.  About an hour of that is prep - you know knocking me out, positioning, and since I will have a chest tube for breathing (uh those of you who know me know they better have me asleep before they put that in me, cause that scares me more than cutting into my skull).  I won't be in ICU, but will be on the neuro floor at University Hospital.  I was told I could be released late in the afternoon the next day or the following day (this is all very good, b/c I had read 2 days in ICU and up to 5 in the hospital).  I would prefer to recover at home.  And they send you home with good drugs!! :)  Apparently, from I've read I won't have much of a memory of the first day, so I will be giving my family instructions to take pictures and tell me what happened.

The recovery at home will be about 4-6 weeks.  The first 2 weeks will be a 5 lb weight restriction, the following two weeks will be 20 lb weight restriction and then weight restrictions lifted.  No really a problem, except for two pint sized boys that want mommy to pick them up.  So there will be some adjustments there.

My principal knows and she has been great.  I was so worried about my students and she told me we didn't have to be specific.  This is exactly what I needed to hear.  It's not that I don't want to talk about it, but how do you tell 10 and 11 year olds your teacher is having brain surgery, but she'll be fine - oh and Happy Holidays.  I just can't do that.  So it has been decided that we aren't revealing the details.  When I return - I will gladly go into the details, because they will see I'm okay.  I sent out a letter to my Hopewell family today - it of course had some humor in it, because I can't be somber about this.  I don't feel badly about this.  I've accept this is what needs to happen and I'm happy that I can hopefully have some relief.  I'm blessed to work with a number of caring people!  It really is a family.  I've already had some people reply with jokes which I love and of course people have sent their well wishes and prayers to which I love to.  I also discovered a friend of mine and I like some of the same artists, because she left an Ansel Adams postcard with some beautiful sentiments on my chair today.  How can I be upset when I feel so loved?  I just can't!

If you want to see diagrams of the surgery you can check out the website of my neurosurgeon: http://www.mayfieldchiaricenter.com/ (under surgery, overview - I have type I)

Well - I'm symptomatic enough...

This appointment was just so different.  The Dr. just came in - I didn't see the nurse until later.  He appreciated my data (graphs, symptom lists, and charts).  He had read notes from the neurologist and knew my meds, reviewed my scans, and said go to our site look at the hope stories - contact some of the patients.  Then contact us - then he said let me be clear here - you need to make this decision - we find that a patient who needs surgery and is ready to have surgery has a better outcome.  I asked what he would do in my shoes - he said gather as much information as possible (clearly he doesn't know that I've been doing that since I found out that the word Chiari existed).  So yes I signed the consent form before I left. 

I'm thinking, but need to discuss this with my better half (so yes, just thinking) after Christmas at the end of Christmas break.  Gives me enough time to figure out how to tell my students, find a sub, get outline plans, and prep my children, and myself.  I don't know why I'm handling this well right now, but I am.  I can talk about it without being emotional - it's strange.  I keep waiting for the other shoe to fall (and it probably will the closer I get to the surgery when it is scheduled)

So my Dr. had a Conquer Chiari wristband and I asked where I could get one - he gave me his.  The nurse came in later - she asked if I had done the walk (that is a goal for next year) - I said no and she said you have wristband and I said the Dr. gave it to me.  Like I said a very different visit - he was nice and he smiled. 

So I will become a member of an elite club know as the zipper heads.  Humor is a great way to get through this.  Oh and please don't feel bad for me - I look at it this way - I have hope that I will have some relief and we are talking a 4-6 week recovery period I mean really in the grand scheme of things that is not a long time. - right? 

So you are now updated and I will keep you posted.  I just read about a 22 year old having this surgery next week she will be in the hospital not only on Thanksgiving but on her 23 b-day (please say a prayer ) -  and a 13 year old is having the same procedure.  See I don't have it bad at all. 

If you are curious you can check out : http://www.mayfieldchiaricenter.com/chiari_surgery.php for details

3 Month (and a week) check in tomorrow

So I meet with my neurosurgeon tomorrow.  I've done what he asked: become more active, lost weight, and kept track of my symptoms more closely.  I really don't know what to expect tomorrow - I mean I know he could say let's keep monitoring your symptoms (because they still aren't severe enough) or of course he could say it's time - nothing is getting better.  I think for me - I just can't imagine the next 40 - 45 years of this daily pain, because nothing I've tried has given me a 24 hour period of relief.  So I think I would consent to the surgery, but I know that with the surgery there is no guarantee.  So I'm uncertain and uneasy of course - I mean it is my brain and I'm kinda attached to it - although I would definitely say it has started a revolution against me! LOL :)

I think what I really want is what I used to be like and feel like.  I think I'm mourning for what I used to have.  I really try not to dwell on it, because there is a reason that I have this and I really have accepted it, but some days I think about a day with no pain. 

At school, since my students don't know - when I lose my train of thought or when I totally forget something (or when I confirm a time for a conference for a parent that isn't the right time - twice) - I wish they could understand that this isn't the real me - my brain sometimes well has a mind of it's own.  But I guess what I've learned from this is to slow down (especially from the conference fiasco) - double and triple check things.  Oh brother and this year I have a Caleigh, Kaylee, Kylee, Caitlin in one class- well I'll just say it is tripping me up left and right and I don't want the poor girls to take it personally - which of course they do.  I call students by older siblings names more than usual - all of this concentration stuff is really bothering me.  Mostly, because I don't want my students to think it's because I don't know who they are - if that makes sense.  I'm trying to just take the slow it down approach and concentrate to make sure I get it right, but it doesn't always work.  Oh well, all I can do is try. 


I will provide an update.