Dazed & confused

Well, it’s officially been a year and a half since I last posted!  I figured there really wasn’t much to report and there was a lot going on my personal life.  2016 was full of amazing moments!  In February 2016, I got engaged to my longtime love, Ryan, and we got married on New Year’s Eve! 1012

I also welcomed another beautiful niece and handsome nephew into the world- Sydney Nugent & Kevin James.

Lastly, I left a real estate job after 7 years and took a leap of faith into full-time sales as a Realtor at Baird & Warner.  It was the best decision I could have ever made.  I am excelling, growing my business, and loving every minute!

However, with the good, comes the bad.  Last October I received some pretty shitty news.  I was scheduled to have my annual MRI in November 2016, but was experiencing sudden negative symptoms in September.  I had a hard time hearing due to whooshing, or fullness, noises in my head.  This was making me dizzier and more irritable than usual.  As a result, I moved up my MRI to early October only to find out, Trudy had begun to grow.  [Cringe].  I never thought this would happen considering all my other follow-up MRIs had such positive feedback – the residual tumor left is shrinking, no significant change, etc.

Considering this was months before my wedding, including all of the exciting things that go hand-in-hand (bridal showers, bachelorette party, rehearsal dinner, etc.), many tears were shed.  I felt sick over it.  Why me?  Again?  Why now?  I sure got hit with the unlucky stick!  The good news was Dr. Anderson, my neurosurgeon, said nothing “urgent” needed to be done.  So, through all the emotions, I remained positive and chose not to dwell on the negative.  I would enjoy the rest of 2016 ringing in the new year as Mr. & Mrs., go on our honeymoon, and THEN figure out what needed to be done come February, when I would have a repeat MRI scan.

February came, I had my MRI scan, and I met with Dr. Anderson.  The report was good- no changes in Trudy since last October.  He said I could continue to wait and watch Trudy over the next year or so.  However, he wanted me to meet with Dr. Leonetti, my ENT and skull base surgeon, to get his opinion.  If you recall, both of these surgeons performed my 14.5 hour surgery almost 4 years ago!

Dr. Leonetti felt a little differently about my situation.  “The truth is, you are only 30 years old, and your tumor is growing, slowly, but it is growing.  The likelihood of not needing treatment in the future is unrealistic.  You have at least 50 years of life left.  It’s going to grow over that time period,” he said.  At this moment, I knew something would need to be done.  He suggested…. surgery.  I felt crushed.  I just had the most amazing 2016 and now I was going to have to have my head cut open again?!  I would have 4-6 weeks of recovery, not be able to work, AND put my new husband and family through all this again?  It was truly awful.

Before scheduling surgery, or making any rash decisions, I decided to get a second opinion.  My mom has always been my health advocate.  Thanks to her, she put me in touch with a world-renowned doctor in California.  His name is Dr. Rick Friedman, and he heads up the Acoustic Neuroma Center at USC.

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After consulting with him, to make a long story short, he too, suggested surgery.  If you’ve ever had brain surgery, you would know why this is not something you want to hear- especially from TWO doctors.

I had no choice.  I was going to make a decision between the two doctors and have surgery again this year (better to do it sooner than later, they both said).  BUT THEN!  I went to visit my best friend Emily in Chicago, whose uncle happens to be a neurologist at the Mayo Clinic in Rochester, Minnesota.  With the help of her parents, they got me in touch with Emily’s uncle, who in turn got me in touch with the neurosurgery department at Mayo Clinic.  Thank you, Taylor Family; You are beyond wonderful!!!

This past Monday, my mom and I had a consultation with Dr. Michael Link, a neurosurgeon, and Dr. Colin Driscoll, an ENT, at the Mayo Clinic in Rochester.

The trip was amazing!  Not only was every worker at Mayo super welcoming and helpful, the facility was beautiful, and the doctors were extremely knowledgeable.  I felt like I was in an episode of Grey’s Anatomy!  After this trip, I feel very encouraged.  However, at the same time, it left me feeling a wee bit confused.  These two doctors suggested…. gamma knife radiosurgery (radiation).  Boy, do I have a decision to make now!  I promise to keep you all updated once I make a decision.  Any questions/comments/concerns are welcome 😊

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No significant change

Hi there!  Wow, it’s been WAY too long since I posted, however, you know the saying…no news is good news!  I guess I felt like I didn’t have much to report about, which is definitely an excellent thing.

At any rate, a few weeks ago I had my 2 year-ish follow-up MRI and an appointment with my neurosurgeon, Dr. Anderson, afterwards, per usual.  My mom and grandma were kind enough to join; thanks for coming ladies!!  The MRI itself was 45 minutes or so being in the claustrophobia-trap (AKA MRI machine) which I control with deep, even breaths (think yoga breathing for you yogis out there) and not allowing myself to open my eyes, everrrr or I really freak out!  It is such a relief once the MRI tech says to me, “that’s it, you’re done!”  At that point I open my eyes wide, looking like a deer in headlights, beyond antsy to get out of that damn contraption.

After the MRI is complete, it’s always nerve-racking waiting to hear my results, and to view the images, but Dr. Anderson and his team need time to review them so I wait patiently.  As I waited to see my doc, some of Dr. Anderson’s Doogie Howser’s came into the room to reprogram my shunt (yes, I still have Mr. Shunt; the magnets from the MRI machine mess with it, so I always have to get it reprogrammed- what that actually means, I don’t even know!), check my vitals, look at my scars and how they are healing, etc.  All clear there! Shortly thereafter, Dr. Anderson came in with the good news!

“From the looks of it, the radiologist and I feel there has been no significant change in the bit of your tumor we had to leave behind.”  For those of you who don’t remember, my doctors thought it was wisest to keep a small piece of Trudy in my head since it was right on my facial nerve; they were confident they cut off all the blood supply to it to avoid any sort of regrowth.  That is the chunk that we are watching to make sure it doesn’t grow.

I don’t know about you, but “no significant change” sounds pretty good to me!  I will go back for another MRI follow-up in a year from now.  Here I am in July celebrating “two years tumor free,” with a lovely cake my family got me.  I’m so thankful for them 🙂  On that note, Happy Thanksgiving to all!

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“I don’t do boogers”—1-year follow up with Dr. Leonetti

Yesterday I had my one-year follow-up appointment with Dr. Leonetti, my skull-base surgeon/ENT, and it could not have gone better!  After he wished me a “happy ANniversary,” (get it? AN = acoustic neuroma?), he reviewed my MRI scans from May and told me how pleased he was with the post-surgical results.  “Dr. Anderson did a tremendous job!  Don’t tell him I said that though.”   I had to remind him that he, too, did an amazing job!  My head scar is a serious work of art.

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I’m scheduled for another MRI in November, per Dr. Anderson’s orders, which will be the 4th MRI I’ve had post-surgery.  If Dr. Leonetti had it his way, he wouldn’t order another MRI for three years!  That’s how confident he feels about the job they did on Trudy and how satisfied he is with the results.  His comments certainly put me at ease!

My second appointment was with Stephanie, a wonderful audiologist, to assess my hearing.  She also tested my hearing before surgery last year and remembered my case quite well; she even referred to me as the “miracle child.”  Can you believe that?!  Anyway, the results were as expected:  100% hearing on the right, fully deaf on the left—duh.

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(I too, had to sit in a soundproof box like the lady in blue above.  That’s also not Stephanie, but I’m just trying to give you a visual)…

The good news is SSD (single-sided deafness)-individuals have options to aid in hearing.  We discussed two of the options.  They are called the BAHA, bone-anchored hearing, and CROS, contralateral routing of offside signals, hearing aids.

First we discussed the BAHA implant.  This option requires surgery, yuck!  “Bone-anchored hearing aids use a surgically implanted abutment to transmit sound by direct conduction through bone to the inner ear, bypassing the external auditory canal and middle ear.  A titanium prosthesis is surgically embedded into the skull with a small abutment exposed outside the skin.   A sound processor sits on this abutment and transmits sound vibrations to the titanium implant.  The implant vibrates the skull and inner ear, which stimulate the nerve fibers of the inner ear, allowing hearing.”  It looks something like this:

Darcie Haswell, photograph of BAHA baha

The coolest part was Stephanie was able to let me “try” it out by using a BAHA simulator.  I plugged my right ear, she spoke to me in my left (while wearing the simulator), and I could actually hear out of the deaf ear!  Pretty amazing!

The other option we discussed was the CROS.  These hearing aids “involve two behind-the-ear units connected either by wire or by wireless transmission.  The CROS systems use the conductivity of the skull to transmit sound.”  Stephanie told me I can order a 45-day trial for a small-ish fee.  I am looking forward to trying these out in different settings (noisy restaurant, loud bar, social outing at a friend’s house, classroom, etc.)  The CROS hearing aids look like this:

cros 1 cros 2

Both the BAHA and CROS options are pretty expensive, but it is nice to know I have options to aid my hearing, as this has been one of my biggest struggles and complaints post-surgery.  I’m just happy I’m here to discuss these options! 🙂

How ’bout these facial nerves?!  Happy ANnivesary to me!  Cheers!

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#takethattrudy

 

D-Day: One year later

This week has been very surreal.  I cannot believe it has been one year since my “diagnosis day.”   At this time last year, I was lying in a bed in the emergency room at Glenbrook Hospital, doctors contemplating sending me via ambulance for emergency neurosurgery at Evanston Hospital.  After hours of waiting, crying, and me telling jokes of all things, the neurosurgeon from Evanston Hospital reviewed my MRI and confirmed my tumor was benign.  He called it a vestibular schwannoma, or as more commonly known, an acoustic neuroma.  After hours of deliberation, I was sent home.  I of course stopped to get Taco Bell on the way back to my house because I was absolutely starving and relieved.

I have come a long way since that day.  I have regained balance (for the most part), my eye prescription is what it’s supposed to be (all thanks to my hero Dr. Sacks), the “fullness” or airplane-noises in my ear have gone, and I no longer have migraines.  However, I now deal with other aftereffects.  I have lost all hearing in my left ear, and with that comes constant tinnitus, or ringing in that ear.  I am now known as SSD, which is single-sided deafness.  Out of everything, that is my biggest complaint, but something I am getting more and more used to every day.  Shit happens…and then you move on.

I am a member of 4 different Facebook groups dedicated to acoustic neuromas and its survivors.  After reading what many of my “tumor friends” have gone through and continue to experience on a daily basis, I feel incredibly lucky to be where I am, both mentally and physically.  I do not feel as though my life has changed as drastically as theirs.  Several of them have facial paralysis, terrible headaches, intense balance issues, fear of social outings, anxiety, depression, and the list goes on…

Thank you all for your support this past year.  I honestly believe I have the best family and friends in the world.  Through this experience, I have reached out to others in various ways, and I feel my role now is to pay it forward.

Happy 4th of July to all!

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For those of you who missed my Facebook post, please check out this link!  I’m a proud Illini alum!  http://www.veooz.com/videos/7HHTRO0.html

May…it go well

Sorry for not blogging in forever, but life has been crazy/busy lately!  I’ve been super busy with both real estate and substitute teaching.  I also have a new nephew, Patrick John, who was welcomed into the world on April 21.  Finally a boy for my family; we are thrilled!  Congratulations to my sister Katie and her hubby Rick!

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For those of you who did not already know, May is brain tumor awareness month.  We brain tumor folk go “gray in May” for brain tumor awareness.  I feel more connected to my fellow acoustic neuroma and ANA communities now more than ever.  I have joined several Facebook groups dedicated to brain tumor survivors, specifically acoustic neuroma patients.  These have been a great support for me and a nice place to go with questions and/or to give advice to others.  I will be attending another ANA support group meeting this Saturday.  I am so looking forward to that!

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At the beginning of May, I had another MRI and follow-up visit with Dr. Anderson.  He said my scan looked great!  It was hard to tell if Trudy’s remnants have shrunk more, but I know one thing for certain—the tumor is not growing!  In another 6 months, I will return to the claustrophobia trap everyone calls an MRI machine.  Sigh.  I have come to the realization I will be having MRIs at least once a year, perhaps for life.

Also, over the past few weeks, I started substitute teaching again.  After that bad experience I had in January with the out-of-control second graders, I sort of when on hiatus from anything teaching-related, but I have since forced myself back into it.  To say it’s getting easier would be a lie.  It is extremely challenging and frustrating, but I still push myself and keep on trying.  I don’t want to give up on teaching, something I am passionate about and studied for so long.  The SSD, or single-sided deafness, continues to be my biggest challenge, especially in a noisy classroom.  I also have a hard time locating sounds since I only have one ear that works.  After a bad day, I find myself getting discouraged and quite depressed.  On the other hand, I feel hopeful after the good ones.  It really seems to depend on the group of students and the teacher’s classroom management plan.

Last, Skrillex is officially gone and you can barely see my scar, at all, thanks to my wonderful doctors.  I can also put my hair in a low-ponytail again without tons of little hairs sticking out!  Such trivial girl things, but I am celebrating it as another one of those “mini-milestones.”

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A visit with Dr. Sacks

Three weeks ago I took my first flight, since brain surgery, to Punta Cana for a little R & R with my friend Elise.  I was very nervous about head pain due to the cabin air pressure that comes along with flying.  Since I had no side effects, (aside from my usual anxiety), I think it’s safe to say that I can check that worry off my post-Trudy list and be okay flying anywhere.  Hooray!  We had a wonderful time.

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Also, I had an eye appointment with Dr. Sacks this past Thursday.  For those of you who don’t remember, he is the man who saved my life and will be forever my hero!  It’s been almost 9 months since my last eye exam with him when he stressed how important it was that I go see a neuro-ophthalmologist because something was causing some serious swelling behind my eyes.  We all know what happened after that.

My eye exam showed improvement in my vision once again and slight astigmatism in my left eye.  My prescription changed a bit—from a -.75 in each eye to a -.5 (again, if you wear glasses, this will make sense to you), and he gave me a corrective lens for my left eye astigmatism.  Being the wonderfully thorough doctor he is, he showed me the difference between seeing with and without the corrective lens in my left eye.  It made a huge difference!  It really sharpened the way I see out of my left eye.  Thanks, Dr.!

After the exam, he took fresh images of my optic nerves.  Again, if you can remember, this is what really worried Dr. Sacks last July and showed the severe papilledema, or swelling inside my head.  I am SO happy to share that the swelling is totally gone and my left optic nerve looks normal again!

If you look at the left images below you can see the cloudy/blurry white fuzz around my optic nerve.  That was the major swelling caused by Trudy.  The images on the right are my optic nerve today.  Kinda creepy, right?  I still cannot thank that man enough for going the extra mile that fateful day and finding this huge problem I called Trudy.  Dr. Sacks, you are the best!

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Ob-La-Di, Ob-La-Da

People say “no news is good news,” right?  Currently that’s how I feel and I think that’s definitely a positive thing!  I’ve been so busy with work lately that I forget to even blog anymore!  I am working full-time at the real estate office and love it.  The foreclosure real estate business is extremely busy; I can’t believe people are out buying homes in these frigid temperatures!  I’d say my stamina is back 100% and I can handle 40 hours a week of work in that type of setting.

A few weeks ago, I had my 6-month follow-up with Dr. Pula (for those who need a refresher, he is my neuro-ophthalmologist).  His assistant performed another OCT scan to test the pressure behind my eyes.  I’m happy to report the pressure has gone down even more!  This makes sense considering Trudy’s leftover piece shrunk 1 mm.

oct scan

He also said my eyesight will not change from this point forward.  Whatever my prescription is is what it will be (for now anyway; I’m fully aware most peoples’ eyesight gets progressively worse over time).  I still gotta schedule that appointment to get a new prescription with my hero, Dr. Sacks.  I will follow up with Dr. Pula again in one year. Hooray for fewer doctor appointments!

Aside from that news, I am looking forward to my upcoming vacation with one of my besties, Elise.  We will be spending 5 nights in Punta Cana.  I think I deserve a little vacay after what I went through last year, right?!  The only thing I am a tad nervous about is the flight.  Not only am I afraid of flying, but it’s a 4-5 hour flight (my first flight since surgery), and I’m concerned about the cabin pressure and it hurting my head.  Stay tuned for how that goes.  Bon voyage!

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6 months!

Today marks exactly 6 months since I went under the knife.  To be honest, it seems much longer than that because I have accomplished SO MUCH since then and feel 99.9% healed.

Back in August, when I had my one-month follow up with Dr. Leonetti, he told me it takes 5 days for a scar to heal but 6 months for a wound.  I can say that the humungous incision on the side of my head is TOTALLY healed and my Skrillex haircut is growing in nicely.  I can scrub my hair clean, sleep on that side, scratch my growing buzz cut, etc.

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I am also almost working full-time.  Since October 1, I’ve been working at the real estate office in Palatine.  I started out slowly, working 2 days a week for a few hours, and am now up to 4-5 full days!  One of my goals was to build up my stamina, and I think I’ve achieved that!

As far as subbing/teaching goes, I don’t think I’m able to do that any time soon in a full-time capacity.  Teaching is unlike any other job.  It’s hard to understand how demanding teaching elementary-aged kids is unless you’ve actually experienced it.  The half day of subbing second graders was exhausting, so I’ll be slowly easing my way back into that.

Lastly, I feel like I can live day-to-day 100% independently, and I definitely have my social life back.  Loud bars and restaurants are still tricky with hearing, but I am adapting.  I don’t know if that will ever get “easy.”  I’m willing to deal with not hearing people; sometimes it’s a blessing 😉

In other news, Dr. Anderson’s physician assistant Anna called me today wondering if a 27-year- old patient of theirs could call and talk to me.  She was diagnosed with bilateral acoustic neuromas (meaning two, one on each side) and has been putting off her surgery for a while.  I told Anna, no question—of course she can call me!!  I am hoping to hear from this fellow 27-year-old regarding her apprehension and fears of surgery and answer any questions/concerns she may have.  (As you all know, I had a pretty positive experience with this whole thing).

Aside from updating family and friends on my progress, the whole point of this blog was to help people, and I’m hoping I can start out 2014 making a difference.  Please keep her in your thoughts and prayers.

Proud.

That’s how I’m feeling right about now.  I finally made my return to teaching (on a very, very, very part-time basis).  This afternoon, I returned as a substitute teacher to a group of noisy and energetic second-grade students.  Check that one off the list!

I gotta say, that was exhausting.  I only subbed a half day, I’m pooped, and my head is pretty much pounding.  Second grade is much different than fourth grade (which is what I student taught), that’s for sure!  The noise level for me today was extremely overwhelming.  I had a hard time hearing students and found myself getting easily frustrated.  I’m not sure if it was because of the chatty children, being rusty and “outta the teaching game” for so long, just my one-eared hearing, or a mix.  I guess that’s TBD.

Either way, I’m very proud of myself for doing it!  My goal was to begin subbing again after the New Year, and I followed through with that.  I think at this point, I’ll try subbing once a week for a while until I feel more comfortable.

The best part about today?  I felt at ease teaching at a school I was used to, which was where I did my student teaching last year!  It was beyond wonderful seeing teachers and my old students!  Everyone was so warm and welcoming, stated how great I looked, and how happy they were to see me back.  Several teachers stopped in to give me a “welcome back” hug.  Many of my former students also heard Miss Nugent was in the building, and came by to say hello after school, too!  I think that the kindness and caring from peers and students was somewhat emotionally overwhelming, but in a good way.  I imagine the more I teach, the more things will settle down into a normal setting. 

All in all it was a crazy-good day.  As my friend Janet says, it’s all about the small victories.  Today was definitely another milestone for me, and for that reason, I’m proud.

Out with the old, in with the new!

Yesterday was a very successful day!  In the afternoon, Wom and I made the frigid trek down to Loyola for my 5-6ish month follow-up appointment with Dr. Anderson (my neurosurgeon) and to go over my MRI that I recently had performed.  It was my first time driving on a highway since surgery (probably not the best of days to practice highway driving considering the roads were icy and frozen, but hey, we made it).  That was an achievement in itself!

After having Dr. Anderson’s Doogie Howser perform his usual neurological exam, he sat down with my mom and me and asked how I was feeling.  My answer?  “Great—like 100%!”  The entire time he was talking, he had this smirk on his face, so I felt almost certain he had good news.  And boy did he!  He informed us that after looking at my most recent scan, he and Dr. Anderson believe Trudy has shrunk!  It’s not much, probably about a millimeter, but it’s somethin’!

Dr. Anderson came in after to go over the actual scan with us and measured it on the screen.  There in front of me was proof that in only a few months, Trudy has begun to shrivel up.  I am SO HAPPY!

Dr. Anderson even admitted that my surgery was probably one of the “best ones he’s done in a long time.”  Ain’t that the truth!  He also reiterated that I am doing amazingly considering how big Trudy was (and then he pulled up the original MRI- eek!)  She was one big ole rude tumor!

You’ll notice in the scans how much my brainstem has straightened out.  I can definitely tell too!  My dizziness and balance have greatly improved since my surgery in July.

trudy mri split of 3

At this point, Dr. Anderson feels confident he cut off the blood supply to Trudy, so she should continue to shrivel up.  I do not need radiation (hallelujah!) and I am on a “watch and wait” basis.  My next MRI and follow-up appointment will be in May where I hope to see more great results!  I’d say 2014 is off to a great start!