Monthly Archives: September 2013

MRI Monday

Today is my first MRI following Trudy’s departure.  Like I had previously posted, we’ll find out if she has shriveled up or the 0.5-1% of her has stuck around or, ugh, I don’t even want to say it—grown.  Obviously, I am hoping there are zero signs of her overstaying her welcome.  I am also hoping I don’t have a freak out when they put me into that claustrophobia trap.  Fingers crossed ALL goes well there!

My shunt is being reprogrammed today too.  Yeah, remember that thing?  I feel like all I ever talk about is Trudy (who deserves NO attention).  Poor ole shunt gets no attention anymore.  My shunt’s still around!  I will be discussing with Dr. Anderson what the next steps with that are (meaning how often do I have to have this thing reprogrammed, do I need to have this forever, what is its purpose now, what is the removal surgery like, etc?)  I have mixed emotions about ole shunt.  I would prefer to not have it the rest of my life, but then again, it saved my life.

It doesn’t really bother me; I just have a huge bump on the back of my head from it.  It’ll become one of those annoying things I’ll have to explain every time I get my hair washed before it is cut.

Hair wash girl:  “Do you know you have a bump on the back of your head?” (Thinking it’s a tumor or that I got clocked in the back of my head in a fist fight—judging me).

Me:  “Oh yeah, that’s my shunt.”

H: “What’s that?”

M: “Like a drain.  It was used to drain fluid from my brain when I had my brain tumor.” (Trying to really freak her out).

H: “Oh…”

[Awkward silence].

What does this “reprogramming” consist of?  I’m really not sure; I’ll let you know.  Here’s a pic of how ole shunt is healing.  My hair is gettin’ pretty long! (7/18/13, 8/15/13, & 9/30/13)

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Two months tumorless

Well folks, it’s officially been two months since my dreadful surgery on July 23.  Happy two-month tumorless anniversary to me!  To say the body heals quickly is an understatement.  Look at me the day after surgery—woof!  My face was tremendously swollen (you can barely see my eyes!) from that trauma of the brain surgery and the many medications, and that facial nerve of mine was extremely weak.  Pretty unrecognizable I’d say!  

I NEVER thought I’d post a picture of me like this (for obvious reasons), but I want people to know there is life after brain surgery!  It’s beyond scary, but I got through it!

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And here I am today, hi!  I know I have man-hands…

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Anyway, all in all, I’m feeling pretty well.  I’m still getting used to not having hearing in my left ear, but I am adjusting.  People say when you lose one sense, other senses become stronger.  This holds true for me in terms of touch and taste.  I am now ticklish (as I had previous posted about during my pedicure experience), and I feel as though I am more sensitive than ever to spicy foods.  I was always wimpy with spicy foods, so who knows…?

I can tell my nerves are still healing because I am still lacking feeling on the left side of my head.  When I wash my hair, I can’t really feel my hand massaging the scalp.  Also, the left side of my tongue and gums feel a bit numb.  As I have learned, this is normal.  Nerves take a long, long time to heal.

The next step is finding out Trudy’s status.  My doctors had to leave a little of Trudy on my brainstem (about .5-1% of the tumor).  This is quite common with how large she was and where her fat butt was located.  I have my first follow-up MRI and appointment with Dr. Anderson next week.  During the MRI the doctors will see if Trudy shriveled up or is still hanging around.  She better not be; she ain’t welcome!

leave

More wonderful news

EEG results—NORMAL!  Hooray!  The lady I spoke to said I had normal awake and asleep patterns with no epileptic activity.  As I had hoped, the episode I had back in July must have been a fluke.  Now it’s time to wean me off the anti-seizure meds.  After that, I will be medication-free!  This is a huge step for me, so I’m very excited!

Also, last Thursday I saw Dr. Sacks for the first time in person since he found Trudy.  I could not stop thanking him [or crying]—happy tears of course!  He, Sue (works in the office), and my mom were all teary-eyed, as well.  He literally saved my life, so it felt amazing to thank him in person.  After surgery, Dr. Anderson informed my family and me that if the cerebrospinal fluid/pressure inside my head had gone untreated, it would have been a really bad situation.  You can guess what could have happened….thank GOD for Dr. Sacks!  He is such a humble man and said anyone would have found Trudy, but the fact is he found her and knew it was a problem that needed immediate diagnosis.

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I’ll end on a positive note, though.  We have a new member in our family!  My sister gave birth to another beautiful baby girl, Shea Elizabeth.  She was born Friday afternoon (hence the reason I didn’t have time to blog with EEG results—sorry about that).  How cute is she?!  I cannot get enough of that perfect little mug.

shea

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EEG

The EEG test was performed yesterday at Loyola and I’m glad to say it was completely painless and I did NOT look like the Wikipedia man!  The tech had me lie down on a hospital bed as she attached 25 electrodes to my head and 2 to my chest with some sticky goop.  (I had to wash my hair twice to get said sticky goop out of my hair, gross).

The test itself only took about 30 minutes.  All I had to do was lie on my back, take deep breaths for 3 minutes, and basically try to fall asleep.  At the very end, she flashed strobe lights while my eyes were still closed to see if it triggered any kind of seizure activity.  The strobe lights didn’t make me feel different and just made me feel like I was at a rave—COOL!  Not….

The results were read by the neurophysiology center neurologist from Loyola yesterday (as Dr. Asconapé was not available), and I was told I would receive a phone call if there was anything of urgency.  I’m happy to report that I received no phone call yesterday!  The test will be read either today or Friday by Dr. Asconapé, and I should have the real results by Friday and will report back then.

Check out how nice my badass scar is healing!  Wonder-doc Leonetti was kind enough to make the incision in the neck area in a crease, so it would be obscure when healed.  No more scabs, Skrillex is growing in, and I can’t even see where the drain hole was anymore (also gross, I know).

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Dr. Asconapé visit

The visit with my neurologist Dr. Asconapé on Wednesday went pretty well.  First, a brief neurological exam was performed by a medical student.   She was the sweetest young girl (I am officially old—calling med students “sweet”), whose mother had an acoustic neuroma removed about a month ago!  And I thought these were rare in the sense that 1 in 100,000 people have them… I swear it seems like I hear of someone having an acoustic neuorma removed every other day!

The exam consisted of a review of systems, checking my reflexes and sensory and motor responses, and a balance test.  When Trudy lived in my head, I could not walk in a straight line (picture a tight-rope walker).  I would literally fall off the “rope” in an instant.  I was happy to see that this has become easier for me.  It wasn’t perfect, but definitely an improvement!

When Dr. Asconapé came in to the room, he wanted to hear all the details of that freaky-possible-seizure day.  As I think I’ve said before, I really have no recollection of that day, so luckily my mom was there to give the details.  Based on what happened that day, my doctor thinks it could have been one of a few different scenarios.

It could have been a seizure or a fainting episode.  He viewed all of my imaging tests and didn’t really see anything that would cause it, but he did mention that Trudy was so large she could have pushed on the temporal lobe, which is the area of the brain seizures usually originate.  He also mentioned that after long, intense brain surgeries these do occur.  The bottom line is we need to find out if I am prone to them now or if it was just a fluke experience.  In order to find out, I am scheduled for an EEG next week.

An EEG is an acronym for electroencephalogram (whaaat?!) and records electric activity of the brain.  Thanks to Wikipedia, this is what I imagine I’ll look like once I’m hooked up.

eegOh AND Dr. Asconapé said his nephew had an acoustic neuroma removed about 10-15 years ago, go figure.  Tumors are officially trending.  #acousticneuroma #braintumor

Odds & ends

This afternoon I am going to visit with the neurologist.  I hope to find out if I had a true seizure or not.  If I did, it is possible I will not be able to drive for about 5 more months.  This will really make it hard for me to return to work or go anywhere independently, and I’ll have to depend on dear old mom.  Fingers crossed it was one of those vasovagal episodes and I can return to normalcy by driving just like the rest of ya!  Watch out!

However, I am happy to say I feel a wee bit more normal now that I got a fresh pedicure yesterday.  My mom, Katie, and I went to my favorite place in Palatine—Lady’s Nails.  (If you’ve never been, go!  They are the best).  I went with an orange-red color since it’s still kind of summer, but turning to fall.

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Anyway, typically when my feet are scrubbed I am not ticklish and I just continue to read my magazine.  However, yesterday was quite different.  I literally almost kicked the nice little Asian man (yes, a man doing my toes; it was excellent) in the face I was so ticklish!  My foot kept tweaking and jerking in all directions.  Wom looks at me and is like, “Did you used to do that?”  I was like, “Umm, no!”  I tried to make it stop, but I couldn’t!  It was quite embarrassing, but kind of fun/funny at the same time.  Just another one of those revelations I’ve had since Trudy was removed.

One other thing…yesterday I received a mystery gift in the mail, (gasp!)  A medium-sized brown box was delivered to my front porch.  Inside the box was a talking teddy bear, a “Noah Feel Better Bear” to be exact.  He is the cutest little bear and is just so kind, but there was no card.   The packaging slip said, “Bill to: Beth.” Who are you, Beth, or mystery person?!  Are you the same mystery friend who attempted to have a little visit with Dr. Sacks?  Perhaps you’re trying to keep me on my toes!  I want to send you a thank you note!  Identify yourself immediately, or else………….

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Six weeks

Six weeks ago today I was in an intense 14-hour-long surgery.  Six weeks?!  Damn, I can’t believe it’s been that long already!  Time has FLOWN.  Not to toot my own horn, but I must say I have made some amazing progress since then.

This past weekend I was able to really work on my stamina.  For the first time, I stood in the shower to bathe, my mom and I took 2 mile-long walks, and I went to a rather large luncheon in a noisy restaurant with friends.  I know it doesn’t sound like much for the average person, but it was a lot for me!

Since surgery, I have been taking baths.  This way I didn’t have to stand for long periods of time and I was able to have my mom assist me in washing my hair.  I have a huge fear of getting too close to my head incision and busting it open.  I know, it’s stitched up and it would probably be really hard for it to split it open (cue gross image in your mind), but I still have a major case of paranoia.  Anyway, I decided since I was reaching my six-week post-surgery mark, I wanted to try and shower all on my own like a big girl.  And I did it, yayyy for me!

2013-09-03 13.37.40Lookin’ good, eh?

Like I said earlier, I also went on a couple long walks with Wom.  For those of you who have walked with me before, you know I am a very fast walker.  In college, my fellow long-legged friend Em and I would always walk super fast.  Our other friend, Lindsay, used to yell at us for always walking ahead of her and leaving her behind.  Sorry ‘bout that Linds!  So anyway, this past weekend Wom thought it’d be a good idea to get out walking.  So we started out on our walk and my mom’s like, “Whoa!  Do you really want to walk that fast?!”  I didn’t even realize I was walking so fast (naturally), and I’m proud to say we kept it up for most of our walk.  It felt so good to get out walking, especially in this beautiful weather!

I also experienced my first outing with several friends in a noisy restaurant.  Boy is that going to take some getting used to.  There were 10 of us at a long rectangular table.  I strategically picked my seat near the end so my right ear was facing the rest of the table.  I had the hardest time hearing!  The restaurant was small and really crowded so there was a lot of background noise, but I literally found myself lip reading.  Talk about frustrating!  I don’t think I’ll be putting myself through something like that for a while.  Unfortunately it was just too much for me. 😦

Tomorrow is my visit with the neurologist, Dr. Jorge Asconape, not to be confused with my neurosurgeon, Dr. Anderson.  It was recommended I see him because of the possible seizure I had back in July.  It’s likely he’ll run some tests to find out if it was a true seizure or a vasovagal episode (as I had previously posted about).  I’m very anxious to get back to work, so it’s important that I meet with him to see if I can drive or if I’ll have limitations of any kind.

jorge