Hello Fellow ANers. I'm out of surgery, and I think I'm the happiest person in the world right now. Groundhog Day has come and gone, and we're in for 6 more weeks of winter. I've already been on my computer too long, so I'm cheating and just cuting and pasting from my website to this post, in hopes that something in my experience will help someone else out there going through the same thing. I haven't figured out how to upload photo's, or even my Avatar yet, so any technical tips on that would be great if someone has one. I'm too tired to try and figure it out at the moment. Nap time.
Michelle
SATURDAY, FEBRUARY 6, 2010 7:38 PM, PST
Saturday, Feb 6th.
RELEASE DAY!!!
Right now, I'm sitting with my family at a lovely home just a block from the ocean in Manahattan Beach and couldn't be happier. I am so glad to be out of the hospital! Hospitals are just not conducive to healing, with the constant interruptions throughout the night, the poking and prodding, IV's, etc, but a necessity in the process. The night Mike stayed with me, he rated his pain the next day at an 8 of 10, and he's healthy! Ha, ha. I have a new respect for anyone in the nursing industry. I was fortunate enough to have some of the best care ever, which makes all the difference in the world. Of course, the boxes of chocolates my dad would bring the staff by on occassion may have helped morale a bit, and they deserved every ounce of it. And my last nurse was kind enough to take out my IV and stop pumping 100ml of fluids in my body every hour so I could actual sleep for more than 2 hours at a time.
So, we made the 40 minute journey to the house from the hospital in tact. It was a bit topsy turvy. Kind
of like being on the spinning tea cups when accellerating or going around corners, and since I'm an
amusement park ride enthusiast, it was actually kinda fun. I went for a good walk along The Strand that
runs parallel to the beach and it felt great to get out in the fresh air. I'm not breaking any speed records
here, but I am making progress.
My pain is in check now, just need to get through a few more weeks when the more serious complications
can occur because I definetely do NOT want to go back for another surgery! So, here's the rundown so far,
and I almost hesitate to put it into words because I'm not out of the woods yet.
- They believe they were able to completely remove the tumor
- Mild balance issues, working on vestibular therapy. Slow, but moving along.
- None to very mild facial weakness at this point!
- My eye lid works fine. Tears work too.
- Difficult to focus on the computer or iPhone for any length of time. I watched TV for the first time briefly
today.
- My taste buds on the right front and back side of my tongue don't work right now, everything tastes like
dirt on that side, so I have to chew on the other.
- Pain seems to remain bearable so long as I don't go too long without taking the medication. That did
catch me by surprise, as I wasn't expecting the pain aspect based on the many people I spoke with and
having other supposedly "more painful" abdominal surgeries. So that did through me for a loop, but I am
certain that it was a set back caused by my bandage being knocked off during a CT Scan the day after
getting out of ICU. The ICU nurses re-wrapped it for me because all the docs were still in surgery. Long
story short, it was waaaaayy to tight. They had it down over my eyes and used scissors to cut it and
loosen it a bit, and then taped it. It was miserable, and NOTHING, and I mean nothing, relieved it until the
doc came in the next day are re-bandaged me. That was a long night, but we eventually got it figured out,
and now I feel like I can really start to let my body heal.
I just want to thank everyone once again for all of the support. I cannot express how much you have all
helped me and my family, each and every one of you, and I am just really taken back by an overwhelming
feeling of kindness and love (and no, it's not the pain meds =)). So thank you, I am truly a very fortunate
person to be surrounded by so many amazing people.
Mike is now telling me I've been on my computer too long, so I've got to check out for now. I can't say I
don't love how he's babying me. It's kind of nice, so I'll just revel in that while I can. Will check in again
tomorrow.
Michelle
FRIDAY, FEBRUARY 5, 2010 10:01 AM, PST
Friday, My bandages came off this morning, and I did a lap around the 6th floor.
I've got one gorgeous scar. Met with Dr. Stefan, the gate keeper of pain
management. Right now, the only thing that takes the edge off is Dilaudid, which I
hope to scale back to Percoset. Sounds like I should be having a lot more fun than
it really is. Of course, for anyone that hasn't had a brain tumor recently removed, it
would be a party.
I have pics but don't know how to upload them. Dr. Samurai Schwartz, an integral part of team Samurai, and to be honest, one of my life savers, stopped by to say hello and check in, and I get the impression he doesn't do that very often for somereason, so I felt very special.
I'm looking forward to seeing my Ayden bug who is flying in to L.A. in about 3 hours. Ok, gotta go, Mike
is now telling I'm not supposed to be on the the computer eventhough I'm typing with my eyes closed,
mostly.
Thanks for the flowers to all, they smell good and brighten up the room. And for all of your posts, Mike
has been dictating them to me, And finally, special thanks to Mike and mom for being the best caregivers
ever. My mom literally slept sitting up in a chair the first night out of ICU, and Mike slept on a bed of
metal coils he affectionately called some kind of medieval torture device last night.
THURSDAY, FEBRUARY 4, 2010 7:21 PM, PST
Michelle has made some real progress today. She was up and doing some walking. She
did 3 sessions and by the last one she was walking on her own. She is starting to eat
solid food and is getting her spunky sense of humor back. Hopefully she will get a good
night sleep to help her in recovering.
That is it for now.
Mike
THURSDAY, FEBRUARY 4, 2010 9:37 AM, PST
Ruff night, still working on pain management but Michelle is doing better this morning.
Today they hope to start on some physical therapy, have her get up and try some walking
among other things.
Much gratitude to Cheryl, Michelle's mom, who spent the night with her allowing me to
get some much needed sleep.
Mike
WEDNESDAY, FEBRUARY 3, 2010 4:56 PM, PST
Overall a good day. Michelle is keeping down a liquid diet and has set up. All good
signs. It looks like she will be out of the ICU this evening. She will be move to a private
room to continue her recovery.
Wish I had more to report but mostly she is sleeping and healing.
Thanks for your continued support.
Mike
WEDNESDAY, FEBRUARY 3, 2010 9:49 AM, PST
Michelle is doing well this morning. She did not get much sleep much
last night. So the nurse asked us to leave for a while so Michelle could
get some rest. The doctor should be in around 11 to give her an
evaluation.
She has a lot to do today. After she sees the doctor they should start
her on liquids. Later in the day they will try and have her sit up. If all goes well they will
move her out of IC into her own room.
She is in good spirits. The nurses in IC have been great. Michelle is the only person in
there right now and she is getting a lot of attention. Here is a photo from last night.
TUESDAY, FEBRUARY 2, 2010 8:29 PM, PST
Michelle is doing good. As you all know she had her surgery today. From all accounts
everything went well. They removed the entire tumor and they seamed positive about
avoiding the prospects of complications. They have her in Intensive Care tonight. If she
continues to improve, as they expect she should be able to move to a private room late
tomorrow. They have gotten her pain in check and have taken her off oxygen. She is
resting.
I would like to thank all the people that have been posting, writing, calling and texting.
Your support during this time has been very much appreciated. Thanks for your prayers
and positive thoughts.
That is it for now since this day has left me wiped.
Thanks
Mike
TUESDAY, FEBRUARY 2, 2010 8:30 AM, PST
February 2, 2010
I had a crazy busy day yesterday filled with pre-op stuff that lasted from 8:30am to
4:30pm. Here's a picture of me with Dr. Samuarai Brackmann yesterday (can't upload it yet). Let's hope he
went light on the coffee this morning. I was beat, but got the all clear from the internist, Dr. Stefan.! That was actually!a pretty fun appointment because!they!test your lung capacity, and since Mike and I are not competitive minded or anything, we both had to try it. Suffice to say, he had me beat with his lungs at 143% of "normal", and I was 103%. Dang, I guess I'm going to have to take up triathlons when I get back.!! Aside of that goofiness, one of the best parts the of the day was getting to meet some of the House Ear Institute Alumni, that I like to affectionately call the L.A. posse. I'm soon to join their ranks, actually very soon, in about 3 1/2 hours my surgery will begin (around noon). I also had a wonderful dinner at Roy's Hawaiian Fusion Restaurant with my family, and then headed back to the Seton House at St. Vincent's for a very LOOOOONG night.! I think I got about 3 hours of sleep. I'm headed to admitting at 9:30am, so cheers and hugs to you all!
Michelle
FRIDAY, JANUARY 29, 2010 12:00 PM, PST
EMAIL UPDATE TO FRIENDS AND FAMILY SENT OFF/SAMURAI JACK
January 18, 2010
For those of you that were not included in my first email, sorry about that.! This may be new news
to you! You may want to scroll down to view that email first.
I just wanted to give you all a quick update, as things are happening very quickly now.! So much has
been going on over the last two months.! I’ve spent countless hours doing research, and talking to other Vestibular
Schwannoma/Acoustic Neuroma patients.! After a lot of deliberation, I’ve finally found my “Samurai Jackâ€, aka Dr.
Brackmann, of the House Ear Institute in Los Angeles.!! Actually, to be clear, I need a team of Samurai’s, which will
include Dr. Schwartz, who is also world renowned.! Apparently this procedure is quite complicated (Duh!! It IS
neurosurgery!), and it takes more than one very skilled surgeon to get the best results.! Anyway, I say “Samurai
Jackâ€, because this is how we’ve described the situation to our 5 year old, Ayden.! Just in case you’re not familiar,
Samurai Jack is one of his favorite cartoons, and there was an episode where he had to go inside of a Dragon’s body
to find out what was causing him so much distress and discomfort.! He found a little dragon in there breathing fire,
that was causing the big dragon a lot of anguish.! So, when Samurai Jack took the little dragon out, the big Dragon
felt much better.! I’m ready for that little dragon to get the heck out of my brain, but not terribly excited about
the process (brain surgery-whew who!), or the possible side effects.! But I feel I will be in good hands, and
whatever happens, I know I have a team of very experienced and highly trained people doing their best to get me
through this in one piece, sans “Dragoâ€!
I do want to let everyone know, that the odds are good that I will survive the surgery, but it is still very scary for
me, and not a procedure to be taken lightly.! Strangely enough, this has already had a positive effect on my life in
many ways, however, my future quality of life could be more challenging, as I could have some pretty severe side
effects.! One of which is facial paralysis on one side.! Well that would just suck, so I am really hoping that is not
something I will end up with. In light of attempting to preserve that facial nerve, I’ve opted for a procedure that
will leave me completely deaf in my right ear.! They do have other options which attempt to preserve your hearing,
but the amount of hearing I have left is pretty minimal, and the odds are that they won’t be able to save any of it
anyway.! Also, since they completely remove the vestibular nerve on that side, my balance will definitely be
affected.! It should get better over time, but I’ve talked to a lot of patients who still have balance challenges many
years later, which get more prevalent when fatigued or stressed. What that means is I may look like a drunken
sailor at times, and get wobbly head syndrome.! Unfortunately for you guys, I will probably be the worlds lousiest
designated driver.! Who knows how long it will be before I will be able to walk a straight line again. I’ll spare you all
anymore details of the other fun stuff that can happen, but this gives you a brief overview.
My official surgery date is Tuesday, February 2nd, 2010, and is expected to take somewhere around 5 to 6 hours,
beginning at around 11:00am or 12:00pm that day.! That’s only 2 weeks away, so it’s coming up very quickly. !I will be
at the St. Vincent Medical Center in Los Angeles, 6th floor. The detailed info on how to reach me at the hospital is
below. I should be in the hospital from Feb 2nd to about the 7th, and then in theLA area until around the 14th.! Then, hopefully back in Tahoe some time after that.
Thank you all for you kind thoughts and support.
St. Vincent Medical Center
2131 West Third Street
Los Angeles, CA 90057
Patients can be reached at 213-484-7111.
FRIDAY, JANUARY 29, 2010 9:43 AM, PST
AND MORE RESEARCH, OF COURSE,
BUT IT'S ALL ABOUT HAVING FUN
December 2009 to January 17th, 2010
I spend countless hours on the internet, researching neurotologists, Acoustic Neuroma's/V
esitbular Schwannoma's in general, the different treatment options available, the
different surgical techniques, talking with other AN patients, and hours and hours in the
Acoustic Neuroma Assocations Group Discussion Forum, anausa.org, which I found to be an invaluable resource.
After meeting with Dr. Jackler at Stanford, I had pretty much made up my mind to move forward with him, and had
set a surgery date on Jan 27th, 2010! But, after talking to another patient of Dr. Jackler's, and several other AN
patients, I decided to get a second opinion with Dr. Brackmann at the House Ear Institute.! To be honest, the
logistics of having this done in L.A. wasn't all that appealing. Stanford was a lot more convenient. But, it's not like
I'm getting a cavity filled here. So, off to LA I go. And, if you know me, you know how I like to travel, and try to
make every destination some kind of an adventure. So, my mom and Ayden accompany me to L.A. for my appointment, but after that, we head to Disneyland and Legoland for two days before flying back home. Unfortuntely Ayden had a bit of a cold, but we all!had a wonderful time anyway.! Just me, mom, and Ayden.! It was fun to escape to Fantasyland for awhile.! And Disneyland with a child transports me back to being 5 years old myself, it's all about having fun!! Ayden's favorite!ride was the Jungle Cruise.! We had to go on it twice.! !He also really like the Star Wars Jedi show, and Pirates of the Carribean.! And Legoland was awesome for the 4-6 year old age range.
I know by the end of the weekend that I will be having surgery with Dr.Brackmann. The detemining factor? He did 4 surgeries last week, and about 150 of the 300 that are done by HEI each year. With a procedure that is so dependent on the skill of your surgeon, this is the reason I ultimately choose having surgery in L.A. That,
coupled with the fact that he just has a good bedside manner! I know I'm just another patient on the table, but at least he makes me feel like he genuinely cares about my outcome, and that goes a long way with me. And finally, I think his motivations for continuing his practice are noble.! He's got to be around 70ish, and you just don't keep doing what he does unless you're passionate about helping people. So, I think his heart is in the right place. Now I
know some people are thinking, Dear God, 70ish years old, is he steady?!!I wouldn't be going there if I didn't know hat he is. And Dr. Schwarts, the neurosurgeon at St. Vincent's is equally skilled. I schedule my surgery for February 2, 2010. 2/2/10, Groundhog Day, sounds like a lucky day to me.
