Thank you all for the positive thoughts and comments. I continue to do well, I spent the first day alone yesterday and I actually napped for an hour and a half . I don't know why I can't sleep, I do feel tired.
Sue,
You are part of our XL club. Which means it is very likely the brain stem was squished over by the tumor.
Brain-stem and sleepNow the tumor is out the brain-stem is taking back its original shape and there is a good chance with the brain also reshaping to fill the gap where the tumor was. There be MAY be temporary pooling of dura fluid- where the tumor once was also.
I was dealing with weird sleep patterns both before and after the surgery. Eventually I healed and settled down to a normal sleep pattern. But the year after surgery my sleep was all over the place.
Here is a link that explains the function of the brain stem
Simple definition
http://simple.wikipedia.org/wiki/Brain_stemMore detail (than you probably want to know
but it helps to be informed of physiology)
http://en.wikipedia.org/wiki/BrainstemOur clubsJust so you know - now that you are a postie that also brings you into the "neuroscience as a hobby" club.
Welcome to our "good bye XL" club, our sleep deprived club and the neuro science club
Weird healing stuff with XL tumor removalsIf you start getting pings and body jolts... and zaps... do not freak... it is all part of everything going back to shape now the brain booger is out. Things are going to move around to fill up that old tumor space- for a while.
Expect flakes of dead ski around the incision too... to be found on your pillow (with some mild hair loss that grows back) in the morning. It is all part of the healing.
If there is any eye irritation be sure to apply eye drops (or the famous goop- "lacrilube") until this too settles down ...as to not let the cornea of your eye dry out.
Healing HappensKnow that healing happens (at a different pace for each of us) and we are all here for you - to answer ANY questions.
If you need to nap in the afternoon- DO what you body tells you.
Dr. KartushI think with Dr. Kartush you are good hands. I thought of going there but it was just too far from Oregon... I also was not up to multiple surgeries
at that time... but given how so many in the XL club came out with NO facial nerve damage (and I DID have facial never damage)... I no longer think his multi-step approach is "too WAY- OUT
there"- as I intially did. Truth is I am not going to worry about you too much (as I have done with some others who went elsewhere) as I think with Dr. Kartush you are in VERY capable hands. I spoke with a woman who he did surgery on, well over a decade ago, and she is today is doing very well today... He has been at this a long time.
Did you know that he developed the facial nerve probe used in AN surgeries and holds the patent on it? He is not just a surgeon but an inventor. I would love for him to chat with our little nerdy neuroscience club- someday. Truth is I would just like to see the nerve probe devise he invented-
in action.
I have a T shirt that says
"I love my GEEK" (know that this is a positive acronym for
Good
Electrical
Engineer
Keener
) as I married an engineer. GEEKS and NERDS - I gotta love them and their genius minds. (But some days mine drives me crazy
too)
I love the video of this total "GEEK dad" (d*** Van Dyke in
Chitty Chitty Bang Bang... the kitchen is a mess!)
http://www.youtube.com/watch?v=thJOfavJLeA...who is totally my husband's character...
to a tee...
I bet Kartush's wife could relate to this one. I just asked my husband to finally clean off his totally chaotic work bench in the garage... and it took him
forever... and it is
still a clutter mess
... but that is the way geniuses are.
You should have seen what my house (and kitchen) looked like while I was was 1st recovering from my AN surgery ...and not able to cook etc. !!!
My youngest daughter told me that she thought Dr Kartush and his facial nerve probe machine would be cool to have at a school science fair.She wants to be in this science fair
http://www.nwse.org/... she also thinks that
Meet the Robinsons movie is a family like ours (A good fun movie to see while you are recovering -with a positive message about promoting child geniuses... and some good laughs.)
Here is the trailer for it
http://www.youtube.com/watch?v=S396-fnLldkTake this time to lay low, watch fun positive movies, read comic books, stick to only positive thoughts during recovery time ... and have afternoon naps (maybe ask someone to buy you a lazy afternoon hammock to suspend between two shady trees on a sunny day.)Wellness wishes,
DHM