Monthly Archives: October 2013

Drug free!

Well boys and girls, it’s official!  I am med-free!  I took my last lil’ dosage of the anti-seizure medication last night and it was a wonderful feeling!  I like to think the “L” on that half-pill stands for “last” medication for a while!  Or maybe it stands for “lousy” joke…?

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Either way, drug free is totally the way to be!

drugs

Other than that, there is not much new around here.  My hair is really starting to grow back to the point that Skrillex is almost officially gone.  There goes my Halloween costume….

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At least now I have some killer sideburns.  Who says ladies can’t rock sideburns?

ANA meeting

Yesterday I attended my first ANA meeting, and it was awesome!  Everyone was so outgoing, encouraging, and knowledgeable.  Upon entering, we received numerous packets of information about facial nerve damage, hearing loss, methods for improving balance, and other issues that acoustic neuroma patients deal with post-surgery.  I can’t wait to read up on all of this and learn even more.

A small group of us, some joined by family (I had my mom attend with me), gathered at the Evanston Library to hear a speaker discuss issues with posture, balance, and movement following acoustic neuroma surgery.  Our speaker was Dr. Jeff Getzell, who is a behavioral optometrist and had surgery for an acoustic neuroma in the past.  Jeff was very informative about what he does and provided strategies we can use to help with our balance and posture.

He had us do multiple hands-on activities as well.  One activity involved three people who tried walking with their eyes closed.  First they walked with their glasses on and then they walked with their glasses off.  When they had their glasses off, they took wider strides and had less tension in their bodies.  This showed us that glasses give us sight, but not vision.  He stated that most people believe vision and sight to be the same thing, when vision really affects how we think, speak, listen, and move.

Yours truly was quite the volunteer for many of the exercises (at first by choice, then I was simply asked to do them).  By the end of his speech, Jeff was referring to me as “his favorite person,” and told me I did a great job.  I’ll take the compliment! 😉

After our speaker, our group was able to ask questions and converse with one another.  This was my favorite part—meeting everyone and hearing their stories!  Out of the 12 people at the meeting, 9 people were acoustic neuroma patients in various stages of treatment.  Everyone had a different story to share.  One man, Gregg, is having surgery on Tuesday.  Who are his doctors?  Well, Dr. Anderson and Dr. Leonetti of course!  He was obviously nervous, and I reassured him that he is in THE BEST hands!

Another young woman had her surgery about a year ago.  She told me she had pretty severe facial paralysis post-surgery but is now almost fully recovered from that.  After stating that Trudy was almost 5 cm, how I had a shunt implanted before surgery, and that my surgery lasted over 14 hours, one man came up and hugged me!  He said his experience was so similar to mine and that we should swap stories because of it.  The only difference?  His surgery was in 1986!  I feel very fortunate that medicine has advanced so far since then, that I had a fantastic team of surgeons and other healthcare professionals taking care of me, and that my recovery has gone fairly smoothly.

All in all, it was a great day!  It was so wonderful to meet others who know what it is like to go through an acoustic neuroma surgery and discuss issues and strategies with them.  I am already looking forward to our next meeting!  We all decided a quiet place is best since all of us only have 1 ear that works- haha!

ANA

Neuro-ophthalmologist visit

This past Monday, the 7th, I had my 2-month-ish follow-up with Dr. Pula, my neuro-ophthamologist.  Remember him?  Yep, it’s been a while!

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Anyway, he had a few things on the agenda.  He wanted to check my eyesight, test the swelling behind my eyes by doing another OCT scan (as I had previously done twice), and discuss what my next steps are.

My eyesight has not changed much.  It is still better than it was at its worst.  My right eye is seeing 20/20 and my left eye is seeing 20/30 (which are both pretty good).  Dr. Pula thinks my vision will still change slightly over the next few months as the swelling continues to go down behind my eyes.  I will have another eye exam in about 4 months.  He thinks by that time, my eyesight will probably not change.

The OCT scan revealed more great news!  The swelling and pressure behind my eyes have continued to go down—I am almost in the “normal” zone for all areas of my eyes.  I had this scan done before surgery, two weeks after surgery, and then this past week.  Before surgery, as I had mentioned in a previous post, the swelling was so off the charts he ordered an MRI (and that’s when we found the reason for said swelling—Trudy, that rude tumor).  Since surgery, the swelling has decreased tremendously.  Dr. Pula anticipates when I see him again in 4 months, it should be completely normal in all areas.

Next week, I will have another visual field test to test my peripheral vision.  The following week, I will be attending my first ANA (Acoustic Neuroma Association) support group meeting.  I am really looking forward to meeting others in my situation, hearing their stories, and receiving advice from them.  After that, I will be quite doctor and/or appointment-less for a while, woo hoo!

I cannot stress enough how great it feels to be improving each week.  Thank you friends and family for your continued support!  I love you all!!!!

Independence

Freedom at last!  I am happy to report I am now driving and working again.  Slowly but surely I am gaining back some independence, and it feels damn good!

Since I’ve been weaning off this anti-seizure medicine for a few weeks and am feeling fine, I gave myself the go-ahead to start driving again.  It felt surreal the first time I got behind the wheel to drive to Citibank (approximately 1 mile from home).  I haven’t gone that long without driving since I studied abroad in Italy for 4 months back in 2007.  I’m easing my way in, driving short distances.  The only change I’ve noticed is my eyes seem extremely sensitive to light, whether it’s the sun or headlights shining in my eyes, I find the need to squint.  I think this will take some adjusting.  For now I am all about the sunglasses—gotta protect them eyes!  I cannot express how nice it is to feel somewhat self-sufficient again.

Also last week, I returned to work.  My former boss at the real estate office, Dennis, was gracious enough to have me back very part-time.  He is allowing me to come and go as I please, basically choosing my own schedule.  How nice is that?!  I am beyond thankful for him.  Best. Boss. Ever.

I worked two days for about 5 hours each.  It is the perfect job for me right now as I am still building up my stamina.  At the moment, my whole teaching gig is on hold.  While I’m anxious to get back to the classroom, I think a room of 28 screaming children would be a little much for me.  Hopefully as time progresses I can do a little real estate and some subbing.

For now, I’ll continue singing Destiny’s Child “Independent Women,” throwing my hands up in the air.

DestinysChild_IndependentWomen

2 month MRI & follow-up

The MRI on Monday went really well!  I almost freaked out when I was told I was being put in the small MRI machine, but I talked myself out of it.  It’s all about deep breaths and not opening your eyes.  It also helped that the tech, Sue, was extremely friendly and informative.  Sue put earplugs in both of my ears to hide the noisy machine.  I thought to myself, “Sue, save yourself an earplug.  I only need one,” (ha!) but I let her do her job.

After the MRI, I met with Dr. Anderson.  He was EXTREMELY happy with my progress.  He said out of the 35 years he’s been working at Loyola he has never, I repeat never, seen someone with facial function as strong as mine after a tumor the size of Trudy removed.  It made me feel special. 🙂  He also said it made him feel good about the job he did.  Duh, he did an amazing job!

Next, we looked at my MRI results to see what is left of Trudy.  As he had told me post-surgery, he had to leave .5-1% of Trudy in there because it was just too close to my facial nerve.  I thought I wouldn’t even be able to see Trudy, that rude tumor, on the MRI scan.  However, I could still see a small ball on the scan believed to be Trudes.  She is about the size of a chickpea.  He said it is hard to tell if this chickpea-sized white blob is all tumor or some fat too from the fat graft (they both appear white on the scan).

We are on a watch-and-wait basis with Trudy now.  I will have another MRI in January to see if she has disappeared, stayed the same size, or grown.  Dr. Anderson said that based on her location he does not anticipate growth.  If she does grow, he will “zap” her with radiation.  Again, since the leftover-Trudy is on my facial nerve, the radiation could mess with that, so I am hoping she shrivels up on her own.

Anna, Dr. A’s physician assistant, reprogrammed my shunt on Monday as well.  Since the shunt has magnetic parts to it, it gets shifted around a bit during MRIs.  After any MRI, I will have my shunt reprogrammed.  It only took a minute and didn’t hurt or anything, so it’s no biggie.  My shunt regulates the amount of fluid drained from my brain, so it’s important to make sure it is at the correct setting.  We don’t want too little or too much fluid drained.   Like Goldilocks and the Three Bears’ porridge, we want it “juuuust riiiight.”

As for ole shunt?  He’ll be sticking around!  Although my shunt isn’t totally necessary anymore, Dr. Anderson said there is no reason to remove it either.  He asked if the shunt bothers me and since I said no, we’ll be keeping him around cuz he’s a good guy.  Should I name ole shunt too or am I just getting way too weird now?  Any suggestions??