Since being diagnosed with NF2 in 1988 much progress has been made in NF2 research. While there is still no cure, there are new types of surgery, new devises to help those who suffer and new equipment to make life more comfortable. For example, the invention of the mobile phone was huge for the world but the concept of a text messaging, email and Facebook have changed her life and others who suffer from this disorder. Her new latest favorite technological advancement is FaceTime. These are all means of communication for her. She has a phone at home now that automatically converts your voice to text so she can read what you are saying in real time then she talks back to you in her own voice. These are each small blessings which have allowed Mom to remain independent.
There however has been one invention which is nothing short of a miracle. In 1999, Mom became part of a federal trial being done by cochlear for the auditory brainstem implant devise. While this devise was created and built by the cochlear Corportation and looks like the cochlear devises you see regularly now, it is VERY different. Mother does not hear through acoustic nerves as they were completely severed in the tumor removal, she hears directly through her brain stem.
This is mom's testimony before the FDA. It's a real reflection of her spirit and strong will. Enjoy!
CHAIRMAN PATOW: Our second speaker this morning is Donna McLaughlin.
MS. McLAUGHLIN: Do they know who I am or should I --
CHAIRMAN PATOW: If you could.
MS. McLAUGHLIN: Just checking. Good morning.
CHAIRMAN PATOW: Good morning.
MS. McLAUGHLIN: I bring you greetings from the great State of South Carolina. It's such an honor for me to be among such a fine group of people this morning, and I'm glad to be here. I'm here to share with you the story of a miracle that occurred in my life last year. In 1988 I was diagnosed with neurofibromatosis 2, a genetic disorder of the nervous system. It is estimated that this conditions occurs in one in every 40,000 births and is found on genes, chromosome number 22.
In 1988, my diagnosis included bilateral acoustic neuromas. The nine tumors on both of my auditory nerves of either side of my brain stem, as well as nine other tumors in random spots between the meninges into my brain. Since 1988 I've had three tumors removed, including two which were the acoustic neuromas, the last acoustic neuroma being removed 16 months ago. When I awoke from the long surgery, I was profoundly deaf. In January prior to the surgery, Dr. Gary Jackson of Nashville, Tennessee informed my husband and I that I was a candidate for an auditory brain stem implant. The implant took place on March the 24th, 1999, the same day that the last tumor was removed. I spent 60 days following the surgery in total deafness. It was such a scary and frightening time for my family and myself. In the surgery my facial nerves suffered some trauma. My taste buds suffered some shock. I've also experienced problems with depression, my equilibrium, tear ducts, saliva glands, and swallowing. I have learned to function, but it has been a battle every day. To some folks, they would have said that my battle would have been too much. If you can imagine, even chocolates taste bad to me. (Laughter.)
MS. McLAUGHLIN: I've lost 65 pounds since March of '99. The weight loss within itself is a miracle. (Laughter.)But not the miracle that I've come to talk to you about today. The real miracle came for me on June the 1st, 1999 when my ABI was activated. You see, I can now somewhat hear. Some folks call it the marvels of technology and some call it modern medicine. You can call it what you like. I simply call it my miracle. My faith tells me that miracles come from God, and I believe with all my heart that I received a miracle. Some of you may also ask what do I hear. Now that's a hard thing for me to answer, that I hear funny things. Let me share to you. I can hear the bell on the car when the door is left open and the keys are in it. I can hear the sound of a Kleenex being crumpled up. I can hear the wind blowing in the trees. I can hear the blinker on the car when I've left the turn signal on too long. I can hear the frogs croaking in our pond. I can hear the crickets chirping on a still night, and I can hear my dogs barking. These are just a few of the things I hear, and they don't sound exactly like they once sounded like, but I'm hearing something, and my braining is learning exactly what I'm hearing when I hear it. I'm still in the process of learning.
The most humorous experiences happened with my ABI, and I think it does us all good to look at our life experiences and get a little laugh every now and then. So I'm going to share with you this little experience that I had. After I got hooked up for the first time with my ABI, my hubby and I ventured down the street in Nashville, Tennessee for lunch. I went in to eat lunch, and I went into the ladies room to wash my hands, and I washed my hands, and I tore off a paper towel, and the paper two went "zip. Well, I stood there, and I thought, "Hey, I don't remember when I've ever heard a paper towel being torn off," or if I ever had heard a paper towel, what the sound was like. So I tore off another one. (Laughter.) MS. McLAUGHLIN: I sat there, and I kind of got tickled at myself, and I thought, "What are you doing?" And in walks this lady, and she looked at me like, "What are you doing, lady?" And I could vision myself standing in a huge pile of paper towels just standing there listening to the zip. So I began to get teary eyed and think about how blessed this little device was really going to make my life in the years to come, and I didn't tear off anymore paper towels. I just went back to eat my lunch.
As the months have gone by, I've had numerous tune-ups, as my children affectionately call them, at the Wilkerson Center in Nashville, and this is where I go to the audiologist, Susan Amberg, there, and she works with me patiently for hours at a time, and makes adjustments to the tones and volumes of my device. At my first reading without the aid of my ABI, I could comprehend the lip reading only 55 percent of the time. Now, with the aid of my device and my lip reading skills, I am able to comprehend 99 percent of the time.
Today I look at life totally different. My friends tell me my self-esteem has improved immensely. I look for the blessings in my life, and I'm here to tell you that my ABI has truly been a blessing. Since my surgery I have been blessed with many wonderful things. Let me share with you a few of them. I was blessed with the ability to hear the crowds' applause when my son, Sam Roland, won his first Tennessee walking horse national celebration down in Shelbyville, Tennessee back in September. I was able to attend my eldest daughter's wedding in November and know when she and my new son-in-law said, "I do." I'm able to hear every afternoon my middle child Celia's dog bark and let me know that she's home from work. I have been blessed with the ability to sit in church on some Sunday mornings and look at my husband and say, "I believe they're singing 'The Old Rugged Cross,' right?" I'm really blessed. My hope is that God will grant me the resolve to use my talents and my gift of hearing to the benefit of others.
Until my activation I knew no one involved in the National Ear Foundation, the Cochlear Corporation, or any of the panels -- any of the members of this panel with the Food and Drug Administration. I have no knowledge of any one of you knowing either me or my family. However, in some wonderful way I think the Lord has brought us all together. He has allowed me to hear again, and you are a natural part of my miracle, and I thank you from the bottom of my heart.
CHAIRMAN PATOW: I want to thank you for your comments this morning. What I need to know from you is two things. Are you affiliated with any company? And has anyone paid your way to come here today?
MS. McLAUGHLIN: Thank you.
MR. WEST: Can I help you? He needs to know if we paid your way here today, Cochlear Corporation.
MS. McLAUGHLIN: Not that I'm aware of. You invited me.(Laughter.). I don't know that you did.
MR. WEST: Well, I think we did take care of her air fare.
CHAIRMAN PATOW: Thank you very much. And thank you for your comments.
MS. McLAUGHLIN: Thank you very much.
I
