I was born on May 20th, 1978 in Reading, PA.  I'll spare you the details of my early childhood - but suffice to say that it was a happy one.  When I was about 4, I started getting tired all the time...and when the doctor checked me out, they found I had really high blood pressure - due to a blocked aorta.  I underwent open heart surgery to have it corrected...and was back on my feet and bouncing around after a few days.  It was around this time that they noticed I wasn't using my right hand as much as I used to.  It was more difficult for me to use it - and no one could tell us why.  I gradually lost control over the fingers, the wrist, and eventually the arm below the elbow.  There's been no real change lately.  I'll explain more about it later. At that time, the doctors told my parents that I might have Neurofibromatosis Type 2.  They said that I'd end up blind or deaf....and mentally retarded.  This was put to my parents so bluntly, that they refused to accept this as an explanation - in fact I never even knew about this until recently.  I have, however, proved those doctors wrong in some respects...as you will see throughout my story.

    After that, I lived a pretty much normal childhood....doing my best with what I had.  I didn't (and still don't) like to use my inability to use my right arm as an excuse  for anything.  I do what I can...and accept that I have some limits.  I started playing the French horn...and eventually became quite good at it.  I was/am also quite good at school.  My mom had taught me to read at an early age..which gave me an edge over the other students.  I was placed in the gifted program, & was always near the top of my class.  In my early teenage years, a small growth developed on my upper lip.  I finally decided to have it removed when I was 15...and a biopsy determined that it was benign.  Looking back on it now, I can see it's connection to NF2 - but back then, I had no idea where it came from.  My dad bought me a Neon for my 16th birthday....and I passed my driver's test on the first try.  I'm supposed to drive with a know on the steering wheel...but it actually hinders my driving - & I do better without it! <g>  I graduated 7th out of a high school class of 95 - and was accepted at Albright College with a Shirk scholarship.

    During my first semester at Albright (Fall of '96), I noticed a constant ringing in my right ear, which was coupled with some hearing loss.  I brushed it off at first...with the hope that if I ignored it, it would go away.
Unfortunately, it didn't...and I went in for a hearing test in Jan of '97.  It confirmed that the hearing in my right ear was not up to par - so I was referred to an ENT (Ear, Nose, & Throat specialist).  He examined my ear, and determined that the problem was not from my middle or outer ear - & sent me for an MRI.  After bringing the MRI back to the ENT, he told me I had a small tumor on my acoustic nerve - called an acoustic neuroma - and that I'd need a neurosurgeon to take it out.  He assured me that it was a safe operation and that all would be ok.  He referred me to Dr. Bigelow down at the University of Pennsylvania Hospital.

    Dr. Bigelow took a look at my MRI's...and saw two more tumors than the ENT told me about.  He saw a tumor on my other acoustic nerve, as well as a very large tumor that extended from my left forehead region into my sinuses.  He looked inside my nose with a special instrument to get a look at the tumor - which was kinda painful despite his assurances "This won't hurt a bit".  He told me that I shouldn't have the acoustic neuroma removed...that the risks were not worth it.  Instead, he thought it was more important to have the bigger tumor removed.  He was also the first person to tell me that I had Neurofibromatosis Type 2.  I had never heard of it before...but the term sounded really scary - surely not something that *I* could have.

    I wasn't pleased with this analysis, so I decided to get a second opinion at Johns Hopkins.  The team of Dr. Minor (specializing in acoustic surgery) and Dr. Tamargo (chief neurosurgeon) was recommended to me.  They had a look at my MRI's...and told me that they'd be willing to remove my acoustic neuroma on the right side....with a 60% chance of regaining hearing - or at least preserving what hearing I had left.  Dr. O'Malley did a biopsy of the large tumor in my head....he even managed to do it painlessly...<g>.  He determined that it was a benign meningioma - a very common type of tumor in NF2 patients.  (A meningioma - according to Webster's dictionary is "a slow-growing encapsulated tumor arising from the meninges and often causing damage by pressing upon the brain and adjacent parts").  They scheduled me for surgery to remove my acoustic neuroma at the end of July.
 

    I was quite nervous about my surgery...but I felt a certain optimism about it.  I felt confident that I'd get my hearing back.  Unfortunately, that wasn't the case.  They operated on me for over 9 hours - the tumor was more sticky than they had anticipated.  It was especially stuck to the facial nerve - they had to leave a small remnant behind in order to preserve my facial function.  They thought they had maintained the sound wave function of my acoustic nerve - but when I woke up, I didn't have any hearing in my right ear.  I spent a night in ICU...and was finally taken to my own room the next day.  I was too weak to get out of my bed...my sense of balance was thrown off to the point where it was a great effort to lift my head up from the pillow.  I noticed that the right side of my face felt sort of numb-ish...but I didn't realize the extent of my facial paralysis until a few days later when I saw my reflection in the bathroom mirror.  I was absolutely horrified at what I saw.  I had almost no smile on the right side...nor could I raise my right eyebrow.  My neck was very stiff...and with the shaved area & stitches on the side of my head - I thought I resembled Frankenstein...LOL.

    Since I lacked control of the facial muscles on my right side, I wasn't able to close my right eye completely.  They put Lacrilube (a lubricating eye ointment) in my eye every night before I went to bed - along with covering my eye with Saran Wrap and tape.  This helped protect my eye from drying out.  The only pain medication I was allowed was Tylenol - every 6 hours.  You'd better believe I asked for it every 6 hours on the dot! LOL

    After talking with the doctors, they assured me that my facial nerve would heal...giving me more facial function - though they could not say to what extent it would come back or how long it would take.  As for my hearing, they told me that it probably would not return.  They also said they found a small meningioma in the lining of my brain, but could not remove it for fear that I'd lose my ability to swallow.  I was given instructions to report any swallowing difficulties when they occurred, so that they could schedule radiation for the tumor.

    They did MRI's on my neck, back, & brachial plexus while I was there as well.  No tumors were visible on the brachial plexus - and to my relief, there were only tiny little tumors along my spine - nothing that would need attention for a long time.  At this point, I learned the probable cause of my weakened right arm.  I was told that there were probably small tumors growing on either the nerves of my right arm or the brachial plexus that are far too small to be detected by any MRI or other scan.  I might never know exactly where they are - and at this point, there is no way they could do any type of surgery to find the tumors and/or correct the problem.

    I started to walk on my own...mostly just around my hospital room - where I had plenty to grab onto as necessary..LOL.  I was lucky in that they didn't have to remove my balance nerve - but the operation still altered my sense of balance.  The occupational therapist had me walk around & do some "household" tasks so that I'd be able to manage once I got home.

    A week after my operation, I was finally allowed to go home.  There hadn't been a *great* necessity to keep me in those last few days - but they wanted to make sure I could get around and about reasonably well by myself - which is understandable.

    After returning home, life was kind of weird.  I was very tired - which was to be expected...so I spent a lot of time either napping or lying around.  I was very happy to be home to my computer...and sat up typing away for as long as I could.  Even just maintaining an upright position took a lot out of me at that point - but I gradually built my strength back up.  My taste was still not what it used to be...it took more than a month to get most of that back.  Nevertheless, I was glad to be home & eating real food.  I'd lost 5 lbs in the hospital...which I quickly put back on once I was home.  I got headaches quite often...and was on a constant dosage of Tylenol.  I was also told Ibuprofen might help reduce the swelling.  I was gradually tapered off the Decadron (steroids)...and luckily did not experience any side effects.  Despite my constant intake of Ibuprofen and Tylenol, I'd often wake in the middle of the night with an excruciating headache.  Generally, the headache would come along 6 hours after I'd gone to bed - which is the length of time that Tylenol is supposed to work.

    Starting to drive again was an interesting experience - since my whole perspective was altered.  Heck, it felt like the earth moved every time I took a step.  To some extent - it still does.  My neck was still very stiff...and I wasn't able to turn it all the way.  It took at least a week of driving around before I got used to things again.  In the meantime, I made sure to give myself a good neck massage every evening.  After a month, I stopped wearing the eye chamber at night - though I continued to use the Lacrilube ointment.

    After getting the ok from Dr. Tamargo, my family took a trip to the beach at the end of August.  I was a bit apprehensive about getting knocked around in the water - but I decided to go for it anyway.  I was in for quite a shock when I stepped in the ocean.  Even contact with the smallest of waves or the pull of the undertow had the power to knock me over.  It's the weirdest sensation I've ever had.  One minute you're standing there - the next minute - the horizon shifts.  That's how it felt.  The first time it happened, I had no idea what had happened or that I'd  fallen until I realized that the sky was not quite in the right position...LOL.
I had to hold onto my brother's or my father's hand to keep my balance.  Getting knocked under wasn't fun either.  Since I couldn't close my right eye all the way, getting knocked under would force my eye open for the duration of the wave.  I soon got smart, though, and bought a pair of goggles.  True, they weren't exactly fashionable - but they let me be out in the ocean that I loved so dearly.  I learned to duck under the big waves instead of trying to take them on - which saved me a lot of headaches.  Getting knocked around in the water did tend to wear me out & give me a headache, so I couldn't stay out as long as I used to.  One thing that experience taught me, however, is that persistence is the key.  As the week progressed, I was able to go out in the water on my own without being knocked over.  The experience wasn't nearly the same as before my surgery, but I was determined to go out there and have a good time.  The only real disadvantage to this was that all of my physical exertion caused me to wake up every night with a headache.  If I had to do it all again, though, I'd still have had my fun in the ocean.

    A few days after we got home, I started my 2nd year of college.  I was very glad to be back...especially seeing as how I wasn't sure that it would be possible.  I took on a heavy load of classes, and jumped right in.
I still got headaches, but they didn't wake me up as frequently.  I switched from Tylenol to Excedrin....and from Ibuprofen to Enteric Coated Naprosyn (prescription strength, coated Aleve).  The Excedrin took care of my headaches much better.  The Naprosyn, in addition to being easier on my stomach than the Ibuprofen, lasts for 12 hours instead of 6.  Soon after I made the switch, I slept through almost every night without a headache.  I also stayed on a regular dosage of Seldane...to counteract the constant stuffed up & runny nose most likely caused by the large meningioma.

    My courses were tough...but I wasn't about to give up.  What really kept me going was the promise of a trip to the UK for a month after Christmas.  I was going to visit the friends I'd made on AOL - and talking to them every night was also a very positive experience for me.  I really don't know what I'd do without some of them...and if they're reading this - they know who they are.  I was anticipating having the big meningioma removed the next summer, so I was determined to have a good time on my Christmas vacation - and I did.

    Shortly after returning home, the 2nd semester of college started.  I kept the standard 4 classes, and went about life as usual.  I had MRI's of my head done in February, and just had the scans evaluated down at Johns Hopkins on March 24th.  I received some very excellent news.  The Acoustic neuroma they had removed last summer showed no signs of growing back.  In addition, neither the left acoustic neuroma nor the large meningioma showed any signs of growth since last year.  On the basis of those observations, we decided not to remove the meningioma this summer.  I've been told that if I develop double vision or any other symptoms...the tumor would have to come out right away.  Until then, the surgeries have been put off.  I can't tell you what a relief that is. :)  I'm also quite pleased to mention that my headaches have decreased in severity somewhat.  I only need Excedrin twice a day (accompanied by the Naprosyn twice a day) now instead of 4 times a day.

    My facial nerve has been steadily healing - and I am slowly regaining function.  My smile now looks very normal - you'd only be able to see a difference if you really looked for it.  I am, however, disappointed that I don't have enough control over my mouth to play the French horn.  Hopefully I will in time.  My right eye is closing better now - but I still use the Lacrilube every night, since that eye does not tear.  I can also raise my eyebrow to about 1/2 or 3/4 the height of the left side.  That's not too bad considering I could hardly move the right side of my face half a year ago.  In fact, Dr. Tamargo remarked that he's surprised how much my face has come back considering how much the tumor was stuck to my facial nerve.