Wednesday, April 15, 2009

My Life with NF2 (So Far)

I started out as a normal child. I was my mom’s pride and joy. The apple of Granny’s eye and nothing could set me back. I had this wonderful family that showered me with love and affection. It was all a young girl could hope for being an only child, with just a mother. My father was not in the picture.

It all begun in the second grade, facial paralysis struck which was accompanied by jolts of pain, throwing an eight-year-old child out of her world that she was used to. For the next two years, reoccurrences of this same nightmare would occur regularly. I went from having Lyme’s Disease to Bell’s Palsy, which neither of them would be any indications of what lies ahead. The doctor’s were stumped and so were we.

In 1990, the paralysis came back again, with the most excruciating pain. My mother had enough and wanted to see what was going on inside of my head, so she insisted on a MRI scan. Sure enough, there was more there than we bargained for. My pediatrician sent us to MUSC in Charleston, SC. This would be the first of many visits, who knew? I remember her being alarmed about the “lesions” that appeared on my scans. She thought I had cancer. I was lucky I did not, but what I did have was an incurable disease called Neurofibromatosis Type 2. And the journey down a long road begins.

Neurofibromatosis (NF) is a genetic disorder that causes benign tumors to grow in the central nervous system. In my case, it was a chromosome missing between my mother and my father, so I was a spontaneous mutation and the first to have it in my family. I had three in my head and three on my spine that showed up on the first MRI. There are several types of NF, in my case; I had NF2, which is when acoustic neuromas are present on the cranial nerves (C1-C2). Thus, causing the facial paralysis and balance problems. I was told I would lose my hearing eventually too, but I did not believe it.

The MRI scans in the 1990’s were a nightmare in itself for a ten-year-old child to encounter. The local imaging was in the back of a semi-truck! I wanted my mother in there with me to hold my hand and tell me it was going to be okay, but with as with any x-ray, this was not allowed. Just a voice overhead from the technician telling me for the millionth time to “lie still.” I am thankful technology grew over the years and the scans are in a regular x-ray room and more patient individuals running them. Of course, I just drift off to sleep now; I'm not ten anymore. Good naps in small spaces, I like to tell myself!

Round 1

In 1993, something had to be done to the tumor on the right hearing nerve. It was growing. The tumor pressure was causing paralysis, balance problems and hearing loss. I was still too afraid and new to this whole damn disease. I just did not know what to do; neither did mama. Dr. Storres, my pediatric neurosurgeon recommended Gamma knife radiation. This was a new procedure and I was a guinea pig—again. It was better than the terrifying thought of them cracking my skull open! So we did it. I believe the tumor was about the size of an egg at his time- could of, would of, should of goes through my mind regularly, but we didn’t know. No one did.

This procedure involved getting a halo put on my head attached to the skull. Then, a one time shot of radiation is aimed at the center of the tumor, in hopes to kill the main cells, so the tumor will die off and shrink. I was 13, so they put me to sleep to save me from having to be awake for the placement of the halo. I woke to the voices of my family. My grandfather wanted pictures taken to remember this wonderful occasion! Needless to say, I freaked out and I refused! My doctors took them for what would soon be my mile high medical file.

I also woke up hungry. One cannot eat if your going under anesthia and other fluids they are pumping in you. In my “holding cell,” the lady next to me was chowing down on a hamburger! How cruel can the world be to a new teenager!!!!

I had to use the bathroom. I was too woozy to get there on my own and the nurses said try a bedpan. Ok; that freaked me out too! Are they crazy?! The smart medical staff put the pan on top of a fold out chair. I did my business and they helped me up. The pan proceeded to fall out the back of the chair and on the floor! What genius thought of that million-dollar idea still leaves me pondered!

I got through the first round of it. It worked for a little while. The tumor was shrinking. Could I be a “normal” child now and get on with it? I don’t think so.

Round 2

Now that I thought my brain was stable, another one decides to cause problems. In April of 1995, I was a freshman in high school that actually enjoyed my life as it was. I had my first boyfriend over the summer and was just learning the rules of that game and of high school when drama struck.

I had been to New York City with my Yearbook Staff. I was learning Photography and experiencing the world. I had just got my learner’s permit and embracing the roads as well! My life was taking off and I loved it!

My yearbook teacher has noticed me stumbling in the trip. She was unsure as to how to approach me on such a touchy subject, so she asked my best friend. I had been denying to myself about the chronic neck pain I suffered from, but I knew what it was.

The morning came that I just could not tolerate the pain anymore. I went to mom’s bathroom and told her I was tired of hurting. She called my neurologist that morning and called me at school.

I remember that call like it was yesterday! It was right before our lunch period and I got the call to the front office. I heard my mom’s voice on the other end, telling me surgery was set. A tidal wave felt like it rushed over me! Oh my gosh- this is real! Walking back to class, the lunch bell rang and I ran into my friend. She could see me about to burst so she grabbed my lunch money and told me to go wait in the yearbook room. I did just that and as soon as I sat down- the tears came. I eventually calmed down enough to eat and talk about it. I never knew it was going to become a regular thing and would feel like “oh, no big deal it’s not as bad as….”

I don’t really recall the next few days. I know it was hard on mom waiting for me. I had a chance of being paralyzed from the neck down, a chance of death on the table, and a chance I would be just fine. Through God’s great glory, I was just fine. The doctor had walked out after surgery, covered in sweat (according to mom). Dr. Storres was a tall man, a wonderful pediatric neurosurgeon. I never quite grasped how such a big man could operate in such a tiny, fragile area. God had blessed him with a real gift. Anyway, he had told mama there was good news and bad news. Of course, she got the good news first- her baby was just fine. Bad news, he saw hundreds of tiny tumors while he was taking the dumbbell tumor off my spinal cord, but he said they might never grow. How is this bad news? I was just glad the worst part was over for now. To date (2009), those tiny tumors have not budged and do not show up on scans.

I had staples from the base of my skull all the way down the bottom of my neck. I couldn’t move my neck for a while had to move the whole body just to look left or right.

They had me on a morphine drip in the hospital- oh yeah! That was a good trip! The thing about the drip- you can only push that little button and actually get medicine so many times! I never knew how easily it was to get addicted to something. It was funny!

I hated shots before this. After they took me off the drip, I still needed shots of morphine here and there. I remember by late Aunt Mary Lou talking to me and distracting me, so that they could give me a shot in my upper leg. Those are memories I hang onto. A good family can get you through anything, at least for me.

I got through it and healed up. Enjoyed life as much as I could. I had no idea it was going to change completely before I knew it.

Round 3

It’s February 1996 now. I am a sophomore and in love for the very first time. Life couldn’t be better, so of course a curve ball was thrown at me. I go in for another MRI to monitor and see where I stand. Chronic headaches- u know something is not right but just don’t want to face it, especially at that time. The tumor on the left AN showed growth. I am thinking “Are you serious” what am I supposed to do now?

I had to tell my boyfriend. I had been dreading that conversation since we started dating. To my astonishment, he was so good about it. His aunt had dealt with tumors in the past, so he was used to it, in a way. God had blessed me again, with someone who would later get me through so much more than we ever thought.

I went in for Gamma-knife radiation that month (again). If I knew then what I do now, I would have never gone through that the first time or the second time. When the rays shoot in for the center of the tumor, it kills everything in it’s path- my hearing nerve was right there.

I was awake for this one. They put the halo on my head in an operating room overlooking the bay in Charleston, SC. It was beautiful and a good way to put my thoughts somewhere else. I was scared of course, but was joking with the nurses to try and lighten the mood! I would hold my breath while hooked up to all the monitors and make the high fast beep. It would freak them out and I was just a laughing! It was painful- no the 12 inch needless that had to go in my skull were painful! I did not cry. I sat right there and was repeating, “Ow, ow, ow, ow, oh shit, ow- that hurts!” One of the nurses made a comment about how she did not know how I was doing it. I am thinking, with a lot of courage. I did this each time a needle was inserted for the front. This was two on the front and two on the back, since they have to screw the halo in and attach it to the skull. They screwed in the front two notches. I remember the blood dripping down my faces and over my eyes like teardrops-much too vivid for 15 years old. Time for the back, they had lifted up my long, brown hair and shaved underneath it for the needle puncture. I cried!!!!! That was my hair!!! You do not touch my hair! They comforted me as much as they could. You couldn’t even tell it after the halo came off. Drama queen? You better believe it!

The radiation was a success for now, but that was about to turn around as well.

Round 4

August 1996, I skipped my junior year and was a senior in high school! I was so happy, and yet about to face my biggest challenge ever.

Two weeks prior to school starting, I had taken a trip to a local theme park. I was noticing distortions in sounds and turning the volume up on the radio because I was having difficulty making words out. I played it off as an ear infection. It was nothing and it would get better.

I had gone to see my favorite country music musician in concert right after that. Reba McIntire. That concert would be my last hearing concert and I had no idea.

The first day of my Senior year approached, as I was getting ready I had my television set on the local weather station that played music. One of my favorite songs was playing: “Don’t Take The Girl” by Tim McGraw. I must have had the T.V. blaring because my mom came in and said “Shanna, can u hear that ok?” I brushed it off and said “Sure I can, it’s just that I love that song!”

I get to school and I am standing in the waiting area with my friends. I thought heard the bell ring and I said, “let’s go, that’s the bell!” They told me nothing rang. Then the bell did ring and I never heard it! Throughout the day, it was the same scenario; it was filled with robotic voices and distortedness. I had finally been able to admit openly that I was deaf in one ear and yet my other one was going, and I really was just in shock. A teacher was verifying that fact that I was partially deaf and I answered her with “huh?” That got a good laugh out of the class and I laughed with them. Who knew?

By my last class, I could not make out anything. I was just waiting for that day to get over so I could get out of there. It was the longest in history! The last teacher finally called my name in a robot voice and I got my book. Luckily for me, the bell was right after and I flew out of there in tears.

I got home and called my mom. I called my boyfriend, Bobby. My god sister was right there with me. Mom was coming home. My boyfriend was on the way, but I was still a basket case. I remember talking to him and not being able to understand a word he said, so I gave the phone to Celeste and said you talk to him because I cannot. They hung up and I got the phone back. She had gone up front by this time. I remember so vividly, praying, “Please God, let me hear one him more time.” I called him back. He said, “Baby, I am on the way.” I told him it was not that. I asked him “Are you still going to love me if I lose my hearing?” His reply “What kind of question is that?” Needless to say I fell against the wall crying and slid down. He said, “I am on the way. I love you.”

Mama got home somewhere in there before he did. Celeste had left. I was lying in my floor, spinning all of my favorite CD’s. I was going to be sure I heard them one last time.

I didn’t go to school the next day. I was so afraid! The calls and concerns were overwhelming, but I just wanted to hide from it all.

I still had a job, which I loved. I had been working in a local Hallmark for over a year. It was a perfect part time job for a high school student. My best friend had called to check on me. Of course I couldn’t make out a word she was saying on the telephone. By the Grace of God, I figured out it was Tara. I just said I am on the way to your house (I knew I would pass it on the way to work) and I just can’t hear you anymore.

I pulled up. She had another friend of ours there and she was just in tears! I saw her and I was crying too. It was just too much and it killed us that all we knew was over. I told her I love you and that I had to go to work, but I would talk with her as soon as I could.

By week’s end, I was completely deaf. Now what? My whole world as I knew it was shattered. All of my hopes, dreams and goal were shifted. What was going to happen to me now?

The next few weeks were shuffles of doctors’ appointments, MRI scans and a lot of waiting! One appointment had me in tears in the “hearing test box” They wanted me to push that damn button when I heard a beep- I couldn’t hear a damn thing, so why put me through this torture! Finally, after sitting through the rounds for about 20 minutes, I just curled up in the booth and sobbed, dropping the damn push button on the floor. I was done. Mama came rushing to me and just held me.

I missed a lot of school. Here I am, supposed to be enjoying it and it was all lost. After about 3 weeks of me not being there, 2 of my male buddies-which I had a lot of, came hunting for me! They found me and they had a bouquet of flowers! Told me how much I was loved and missed and to please come back. One thing I had still were good friends to help me cope, so I did go back.

It was a hard adjustment. I had to rely on friends and a note taker to learn my studies. I was there for about 6 weeks before surgery took me back out for a few months.

See the right AN had ballooned up to the size of a tangerine and the left AN was growing as well, hence the deafness. However, we couldn’t take the chance, the larger one had to come out first or I would die.

October 1996 rolls around, barely 2 months after the hearing loss and now the surgery date had arrived. My Great-Grandmother from Alabama had come down to see me before I had to go in. She was supposed to go home that morning. To my surprise, I walked into the waiting room and there she was sitting, crocheting her next creation! Along side was my Great-Aunt Mary Lou. My Grandmother and mother were right beside me. My name is called for surgery prep, so Mama and I go back. The rest is a fog and the best description is given to me through Mom.

Ten hours of surgery! Dr. Patel leading and God only knows how many doctors assisting. They would take turns going in a just grabbing pieces and pulling it out. I was in ICU for 2 or 3 days and I did not wake up until 2 days later- I think! It might have been 3! Bobby had come to be with me the day after. I don’t remember. In ICU only immediate family is supposed to be with you, but Mom let him be with me instead. He stayed with me and cleaned me up because from what I understand, I had thrown up on myself somehow? Who Knows? I am just glad God had blessed me with a teenage boyfriend that could handle something so deep.

I had other visitors after I got out of ICU, but I cannot recollect all of it, nor can I recollect the timeframe. I know I was in the hospital for a week. After 3 days of consciousness, I wanted to go home!

The craniotomy had left a hole in my head, literally! (Today I can take a small tangerine and it fits perfectly in the indention in my skull) The doctor had to take fat out of my right thigh to help fill in the space, so that when they stitched me up my head wouldn’t be to lopsided. I asked about the bandage on my leg probably ten times before they told me. I hit the roof! They cut my leg! WHAT? I am 5 feet 9 inches and 3 and a half of that are legs! They cut my long legs up!! I was pissed off!!! I said, “why didn’t u take I out of my ass?!!” They laughed and told me I did not have enough fat in my butt for that! It was a deep, dark red scar for a long time and I was so ashamed of it, but over time it faded out and is barely noticeable now. This was not before I tried every tactic to hide it or camouflage it. I even got a tattoo on that top right thigh. If I was going to be in a bikini with this scar on my leg, then that tattoo was going to draw attention, not the scar!

I had to learn to walk, to eat, to talk, to write- everything was like a 5 year-old child. I had to catch back up to a 16 year-old young lady. About the time I had finally conjured the guts up to walk down the hall, I meet an elderly lady and her husband. She was a patient and he was walking the halls as I was. Mom and I both walked down there and they were as nice as they could be. The woman had seizure right there while I was in the room. Now that freaked me out all over again! Thankfully, she was fine and we kept in touch with them for a few years after that. Of course, eventually lost it with moves and such.

I got home and recuperated for a while. When I walked into the front door of the house and into the living room, the dining room was a clear shot. Bobby had bought me a BIG teddy bear (which I had been wanting so bad) with a balloon around it that read, “I love you.” I burst into tears again and was like ‘Mom, he really does love me.

I was on open-homebound with school and my tutor would come in a keep me up to date with my schoolwork. Regardless of the hell I was going through, I was damn sure going to graduate on time! I don’t even remember how long it took me to go back or how long it took me to be able to drive again. It came and it went, just like life seems to do while you are living it. Despite all the shitty odds stacked against me, I did graduate with honors and a year ahead of time. I got to go to my senior prom and even try to work a part-time job. It was in a movie theater, so at least I got to take naps and rest in between shows! (I am laughing!)

Round 5

Life happened in between the months of recovery, but I was still “smile less,” literally. Needless to say, I had lost complete facial movement from the surgery and the tumor pressure still pending on the left side.

The doctors told me I would never smile again! I refused to believe that! That is one word you do not say to me! It is not in my vocabulary. Dr. Patel wanted to take my left facial nerve and reroute it to my brainstem. Overtime, the nerve would grow back and should create a smile crease on my face. I did not want this! I wanted my right side done first because I just knew it had more smiles left in it!

They ran facial EKGs to test the nerve function in my face. The right side appeared to be dead, but the left was still thriving and intact. So after much effort, they convinced me to do the left side in hopes to restore some kind of movement.

It’s the morning of surgery, again. We go in and they prep me. I am just ready to get on the road to recovery and get some life back to my face. I wake up and I freaked out!!! I had a sever sore throat, on the right side!!! What?! They were supposed to operate on the left hand side- MOM!!!!!!!!!!!!!!!!!! She was just laughing at me and said calm down and listen.

Dr. Patel had come out to her right after surgery and said, “We did the right side!” Mama said I hope you got the right side! He said “No, ‘the right side’, not correct” They had tested my nerves one last time before surgery and wouldn’t you know it, there was a spark on my right side. I had a tiny piece of facial nerve left and he saw an opportunity and took it! Praise God! So now, when I grasp all of this all I wanted to say was “I TOLD YOU SO!”

That was same day surgery, so Mama and Granny went with me and were taking me back after I was able to leave recovery. I wanted something cold to sooth my sore throat that I was too thrilled to have! Best surgery ever! So we stopped and got me a Frosty from Wendy’s. Now that was good eating!

It was supposed to take about 9 –12 months to take effect. In August, not 5 months after I was standing in my bathroom pulling my hair up. As I was pulling it back, the corners of my mouth went with it! Hot Damn! I dropped the brush and screamed for MAMA!!!!! I ran into her bathroom and said “mama look!!!” (Thinking oh, please do it again- I hope I don’t break it!) And it did it again! I hopped in my car and ran over to my friend’s house and she was just ecstatic with me! It was a ray of light after all those damn dark clouds.

Bobby and I had broken up in July of 1997. He tried. We were just to young to be dealing with such grown up issues. I think if I could of run from it, I would have done the same thing. Physically, I was getting better, but emotionally I was still a mess. I hid behind him and was refusing to grasp reality. I think on some level he knew this and he knew that the only way for me to get better was to let go. So on top of everything else, I had to deal with my first broken heat as well. I didn’t do a good job and was suicidal for along time. I do remember being told that a friend of mine told him when my “smile” started to come back and the way he just lit up. That helped me realize he did do it for me. It may have been just as hard on him as it was me, but that is something I never really know. As with any first love, he will always have a special place in my heart.

With the “suicide” thoughts, my main thought was to make it look like an accident. I drove a 1990 Geo Storm at the time. A tiny, little egg car, which I loved!! I thought about riding down the road and swerving in front of a Mack Truck-enough said, it would have crushed it! My thoughts grew to one attempt. Not a valid attempt by far! I tried to slit my wrists with a dried out ink pen! (Ok- when ya’ll stop laughing- remember it was not a valid attempt! It was more of a cry for help). I was at my godmother’s house and they had all gone to church. Lord knows, I should have gone with them but I was just too angry at the world. My godfather was outside tinkering in the yard. I realized I was at the bottom, so I picked up the phone and called Bobby’s house. His mom answered the telephone. Of course I can’t hear her, but I counted and I waiting and I finally talked. She heard me (almost hung up b/c I waited too long to talk and she thought it was a prank!) She was at the house with 15 minutes. She was a shoulder to cry on and someone whom I was incredibility close to at the time. I cried and I cried. It was just too much. . My godmother had taken my keys and would not let me drive. I was so mad! And she was so right not to let me. My mom and my aunt came to get my since we all had been at the lake. The wonderful world of counseling started not long after this.

I did not think I would ever talk to a complete stranger about my problems. How is that going to help me? How are they possibly going to understand? Talking about it did help and through the sessions and Zoloft, my emotional state improved.

Round 6

Now, all the while that I am dealing with paralysis, deafness, a failing relationship, school and a roller coaster of emotions, my eyes decide to start acting up as well! As if what I was doing wasn’t enough already? First, they started to dry out. Ok, use occasional eye drops and be on my way. Second, the right eye started shooting off to the corner of my eye socket! That was freaky! This came from the nerve damage and eventually I lost the control to be able to move my eye around. My eyes were drooping severely and would not close. This is very important during sleep to restore moisture and rejuvenate your eyes.

In comes a new doctor now. Dr. Howard, which is a specialist in eye repair. I had eventually got an ulcer on my right eye that scarred my cornea. So the for the first try, he stitches up the right corner a bit and pushed up my cheek. Plastic surgery at 17! GO Shanna GO!!! His work was beautiful once healed. However, I looked like someone knocked the shit out of me for the next few days. We had gone into a restaurant a few days after that and a man made a comment “Somebody sure knocked her!” That was funny!

Round 7

I started College in August of 1997, right after my wonderful smile came back and my eye healed up. I call the next few years in my life, my growing and living time. I did just that and I loved it. I had a blast! I was happy for the most part. I had all sorts of experiences that helped form me into an adult.

I had the most perfect smile and perfect health the next 7 years and will always be grateful that I was blessed with that for a good run. I had minor surgeries during this time. Along with having tumors develop in the CNS, tumors also can develop outside the body or right under the skin.

My first run in with this was a fibroma that developed on my left ring finger (wedding band finger). I had it all through out my childhood, but if the tumors don’t cause a problem, they stay! My finger looked pregnant! It finally grew enough to where it was sending pain through my hand and if I hit it while clapping- wow that hurt! I cannot even remember that doctor’s name, but he cut a zigzag pattern on my finger to get it out, so that he could save my nerve as much as possible. He got that tumor out and it healed up quite nicely!

That was sometime in 1998- I think the fall? I know I was working at Hallmark because I remember trying to put cards in the bad and how hard it was! It was funny though. I guess after the “BIG” surgeries, everything else is cake!

Also in 1998, I had an “alien mark” removed! That is what we called it when I first noticed it. It was a patch of small tumors on the bottom side of my right abdomen. It was funky! Same thing, it started sending sensations up my body and had to go. The doctor cut that one off (scar looks like an appendix scar, just higher up) and a tiny nodule that was on the side of my left temple. That just bulked up to be scar tissue! So I still have a knot! LOL

One thing I did have during all this was a major tattoo phase! I was so embarrassed by all my scars at the age of 18 and if people were going to be seeing them, they were going to see something prettier! I got butterflies across from my abdomen scar, a rose on my thigh from my leg scar, and then a few more just because I could! I know- it was a phase like I said!

Four years passed, still working thru school and I had started working for a local bank in the process. I was good.

I had some female problems to deal with and then my gynecologist said, “Oh, we can remove the cyst.” She called it a Bartholomew’s Cyst? Something like that! I told the lady it was probably a tumor and she said No, I don’t think so. It was on my left vulva- highly an embarrassing place to have one! So she went in to “pop the cyst” and guess what she found, but a tumor! I told her so! I don’t care for doctors that treat you like a number and not a patient, so after that was finalized, I changed real quick! That was a painful surgery though! She had to cut deeper than what she had thought and it was just a pain to even stand up! I was glad when that was over.

April of 2003- well you know what? This time I decided I want surgery! I was about tired of going into the hospital because I had to go. Now it was for me! I went and got me a bilateral breast augmentation and have loved them from the moment I got them. It was well worth it and made me feel complete as a woman.

Round 8

By 2004 I felt normal again. Whatever that is! I felt “pretty” and felt in control of my life for the first time since, well, ever! I was having the time of my life with my friends and meeting new people.

I started to notice a wobble here and there and my face started to feel tight. I thought to myself, “oh God, please not again!” So, I scheduled a MRI scan of my brain and wouldn’t you know it…. My left AN had grown enough to start to push me. I was hell bound not to go through all of the shit I went through previously and it was still “small,” so I told Dr. Patel to take it out. “I am not about to go through what I did with the first one and if I can save my smile, then why wait?” He agreed and let me set up surgery for whenever I wanted it. After the 4th of July for real! I had to enjoy my summer as much as I could!

July 7, 2004- cutting it a little close, don’t ya think? I went in expecting another craniotomy and to my surprise I didn’t get it! YES!! He preformed micro neurosurgery on me. This is drilling a little whole in the skull and chipping the tumor out piece by piece. I think it took about 4 or 5 hours. I was fine, but I woke up pissed off!

Remember the whole “smile less” thing I am trying to avoid…that DID NOT happen! I had “half” a smile again. WTF?! I did not want to deal with this, not now. I felt like a freak again and had to learn to live that way all over again! Yes, the surgery was a success and it was safer for this size of a tumor, but why, oh, why me? What had happened was with each chip, it would bang against the facial nerve and pretty much, it was swollen up like a balloon. Nerves take forever to heal. To this day, I do not have what I had prior to surgery, but it did heal enough to where I feel secure about it. I still have my good and bad days with it and the esteem issues every now and then. I shouldn’t, but that is just something that will always happen.

My hospital stay was rather short; I was home within 2 days of surgery. I stayed out of work a month for healing. My friend, Sally, was in school to be a nurse, so she took care of me or hung out with me at the pool to insure my safety. Can’t be too careful when healing from brain surgery.

Dana kept reassuring me that I was still beautiful and did not matter if I could smile or not, just that I was here. So many others kept telling me that as well and that helped things too. I was so glad when I finally got back to work and my co-workers welcomed me with open arms. My friends and co-workers don’t see a freak, they see Shanna. I should know that by now. God blessed me with a wonderful family, friends and a comforting job with people I can count on in times of need.

Round 9

The eyes have it! The tumor aftermath is all the next few years bring. Gotta love it! Since I have had so many fights with facial paralysis, some of the nerves in my face are just dead. My eyes are affected badly. I cannot scrunch, raise, wink, nor cry and by this time, they were “hanging open.” Your lower eyelid is supposed to rest on the bottom of the eyeball; mine hung like 10 feet below! Ok so I am exaggerating but that is what it felt like!

In May of 2005, I went in for another eye surgery; both eyes this time. I had to have a bilateral eyelid lift (they stitched the corners up) and they place gold plates in my upper eyelids to help them close. I remember waking up from this one quite well! I couldn’t see a thing- deaf and blind for a minute there! NOT COOL! I cried out for MAMA! I freaked the nurses out so bad, that they ran and found mama and brought her too me. The only way I knew that was my mother was by her fingernails and her hands! I was very relieved to have that reassurance. It was about ten of the longest minutes of my life, then a little peephole open and I COULD SEE! I looked like someone had beaten the crap of me for a while. Not pretty!

That eventually healed up and I went on about my life as I could. I cannot believe I am 25 now and have been dealing with this for so long now. Does it ever end??? NOPE!

Round 10

Between my last eye surgery and the one that is approaching, I lived but I was still timid and so self-conscious. Who would love me now and want all my problems? It is just too much to ask of anyone or so I thought. I would soon learn otherwise!

I met a man in June of 2005. I wouldn’t say I fell in love with him, but I guess on some level I did. He seemed to take me as I was and not worry about anything else. I could not have been more wrong. I married this man and that would be the biggest regret of my life! He was a con artist and he played on my deafness and self-esteem issues. My once strong aura, turned mild and meek and “Shanna” almost disappeared. I knew before I married him, that I didn’t need too, but I was already in so deep and thought I couldn’t get out. My advise to women: YOU CAN ALWAYS GET OUT AND IT IS NEVER TOO LATE UNLESS YOU ARE SIX FEET UNDER! Do not let it get to that point! I know if I had of stayed any longer, it would have become physical abuse to go with the emotional abuse as well. He took me for all I was worth financially and emotionally. I still cannot believe I let that happen. It made me realize just how tough I really am! I got out in November 2006 and keep getting stronger!

Right after I moved back home, I had a pain shooting through my foot. I had a pea size tumor on the top of my foot that sat on a nerve. It was growing and OUCH! It had been there for a very long time, but as with the other tumors, we don’t touch them unless they cause a problem.

That was same-day surgery and a very easy one to me. They numbed my leg from knee down and knocked me out for about two hours. Little did I know my leg was going to be numb for a much longer time- I think it was 6 hours? I couldn’t help but laugh when my mom and I were trying to hobble in the house together. I finally said forget this, got on all fours and crawled! Day by day, I would drag my foot and put a little more pressure on it. I lost some feeling in my leg, but eh? What else is new? You learn to live with an “adjusted” body.

2007 was a good year for tumor growth. No changes really occurred, so I was able to start putting my life back together that had been lost from the marriage from hell! I started the local gym at our hospital in February of 2007 in hopes to put some weight back on my body. Over time my strength and weight came back to a healthy range. Even better, I met some very good people there, which are still with me today. I have been working out with them for the last three years and they help me with the motivation I need to keep pushing.

In August of 2007, I had to have my eyes done…again! The dryness was just getting unbearable again and the left eye was sagging a good bit. They had me in for same day surgery again to seal my lower tear ducts and to close my left eye a little more (stitching in the corner). It was a no brainier surgery and I just about forgot I had it done! Thus, did add a little bit of moisture to my eyes. To this day, I still use eye drops every day and drop the several times a day. I have three different eye drops for my eyes! One is a mild lubricant; another one is a stronger drop to get the itch/grit out, and then another stronger drop that “clouds” vision. I just got that one (2009) and use it at night along with my eye gel like lubricant to add comfort to my eyes as I sleep. I can tell a difference if I do not have them! The strongest drop cannot be used all the time because that will irritate my eyes also. It is a constant game of trial and error.

INSERT April 14, 2009

How exciting was yesterday! I got the best news in the world! It is still far off from being doable, but it is the first ray of Hope in 13 years! Through Stem cell research, they are trying to replicate the auditory neurons and cell hairs to restore hearing loss! I always thought I would be old and gray if and when they came out with something, but maybe not! Hopefully within the next 5 to 10 years, they will progress with this phenomenal research. I am very happy! If my future children inherit the NF2 gene from me, then this may help them not have to go through what I did. Below is the summary listed on, which is the site for the Children’s Tumor Foundation that specializes in NF1 and NF2 cases.

Could New Stem Cell Discovery Benefit NF2 Patients?

April 7, 2009: A research team at the University of Sheffield in the United Kingdom have replicated auditory neurons from stem cells, a breakthrough that could, in the future, help restore hearing in deaf individuals – potentially including people with NF2-related deafness. This is a groundbreaking finding.  Cells of the hearing system cannot regenerate themselves so once these nerves are damaged or lost – as they are following surgery to remove an NF2-related vestibular schwannoma – deafness is permanent.

The key research discovery has been made by Dr Marcelo Rivolta and his colleagues. They have been able to turn fetal stem cells into sensory hair cells or auditory neurons, cells that are critical in hearing function. This research progress will be reported on at a meeting of the UK National Stem Cell Network in Oxford, England this week.

The long-term goal is that these newly generated cells could be surgically inserted into the human brain and would restore lost hearing. The approach is currently being tested in animals. Though it is in its very early days, if this is successful, then looking ahead the technique could "potentially benefit NF2 with nerve regeneration," says Dr. Gareth Evans (St. Mary's Hospital, Manchester, England), a worldwide leader in NF2 clinical care and research.  

Though it will be some years before this hearing restoration approach can be tested in humans, similar research in the UK has used stem cells to restore eye tissue in macular degeneration, a common cause of blindness. Clinical trials using stem cells to treat macular degeneration in patients will begin in 2010 or 2011.

Round 11

In November of 2007, I had finally gotten comfortable with myself again. I stopped trying so hard to meet someone and was quite ok with being alone. I had gone to a local spot just to hang around familiar people and to my surprise, ended up meeting a really nice man. When I walked in the door and the way I was standing before I got seated, he had walked passes me and “bumped” into me! I was like what was that? I got goose bumps up and down my spine!! He had been looking my way all night, but I was thinking, “Nope, I don’t need a man to be happy!” Eventually, he came over and we talked and laughed so much! It was mind blowing! Rion turned out to be the son of a man I had known since I was a child! I certainly fell in love with him and his daughter, Jenna. We had 8 months together before we would eventually drift apart and it was not easy, but it happens. He taught me how to love and trust again and that I did deserve it. I will never forget that!

In January of 2008, just after Christmas with Rion and his family, I was scheduled for a tumor removal from the Lumbar Spine. It was very small, but was causing great pain. A few months before that, I was having pains shoot down my left back/rear area. It would send me home in years! I looked up spinal tumors online since I had never really dealt with them that low and every symptom I could check off. Oh great!!! Another one! I had constipation; back pain worsened when I lay flat, and would drop things when I really thought I had a good grasp on it. I talked to Mrs. Carolyn (mentioned above) about it and just sat and cried again because was I ever going to get to start my life? Rion came along right after that conversation with her and luckily for me, he was not shocked by my “history” since his mother and father had known me a while. He did GOOGLE it and found out just what it was.

I am getting off track here- just bear with me! Lol The surgery was very easy for me compared to everything else. BUT recovery kind of sucked! I didn’t want to move! Took a few hours to get it out and I was done, but I had to lay flat for 24 hours after that. How boring could that be?! I was able to TEXT, so that was my kill time and sleep, when the nurses don’t aggravate ya! Rion came down the next night to relieve Mama, which was a first for me! He sat with me all-night and got anything that I needed sweet-talked the nurses for me and that worked nicely too! They took my catherder out after a day so they kind of forced me to get up. You are not supposed to use your body weight to get up, I used mine, holding onto Rion and totally pulled my back out of whack- OOOOPS! That hurt too! WOW! But it finally soothed and then I learned to roll out of the bed and ease up. I was in the hospital a total of 3 days and hit divorce court from that PIG mentioned way above the next day!! LOVED THAT! Let a tumor stop me? I don’t think so! I don’t have time for that! I was out of work a week and then started on half days until I could sit for an 8-hour workday. All was fine and I healed up nicely. Lost some feeling hear and there and still drop things for no reason, but nothing ever goes back to the way it was, so you learn to live with it.

2008 flew by, like time usually does. By July my eyes could wait no longer! I went in for a bilateral cheek lift (I have no idea what the medical term is for it! I gave up learning all those damn things) and to tighten my left corner of just my left eye. Dr. Howard did wonderfully! The result was amazing after the puffiness and bruises went away. I couldn’t be more thrilled with the job he did. It is still wait and see because my tissues heal different from “normal” people, so I may need further surgery in the future especially for the left eye. I had my check up for that in March and he is very happy with the results as I am, but we both know that I do need another small stitch up in the left corner- it’s trial and error. Got to inch up so you don’t overdo it.

November 2008 I had my check up scans for the spine and all was stable. Dr. P said to wait a year, but I am too paranoid to actually make it! I have a scheduled follow up full body scan in May 2009. One day at the time is all I can do.

Tuesday, April 14, 2009

Start of It All

I am in the process of writing my life long battle with NF2 (Neurofibrmatosis Type 2).  This blog is set up to post that story when it is complete and then to add more to it.  I hope that my fellow NF2'ers can relate or use as inspiration and that people who do not know what it is can be made aware.  There is no cure and it is a hard thing to live with, but the point is, we live!  God Bless!