About Me

Hi! My name is Toni (nickname "Pip") and I am 38 years old. I live in Louisiana with my husband . We have 4 kids-they are cats but don't tell them that! I enjoy reading, doing Sudoku puzzles, playing Disc Golf (just at my home now), and my new hobbies are dance hula hoopdance and Poi spinning! I was, and still do a little work in the field as a computer technician, and am a "retired" HAM Radio operator- kt0ni Extra Class, 73's to all.

I was born hearing and sighted. When I was 6 it was found that I was completely deaf in my left ear but no one knew why. I went to public schools, grew up "hearing." I didn't know any hard-of-hearing or deaf/Deaf people, nor did I know there was such a thing as a Deaf Community. When I was 12 I was diagnosed with a Cerebellar brain tumor and it was that tumor that had cut the hearing and balance nerve on my left side. When they removed the tumor they did a lot of damage and I was left with severe learning disabilities and other cranial nerves were cut such as the one that controls facial movements. Because of that the left side of my face is paralyzed. When I was 25, in 1995, I started having vertigo spells and started losing my hearing in my right ear. I was diagnosed a year later with a rare inner ear disorder called Meniere's Disease, or MM for short. MM causes hearing loss, balance disorders, constant dizziness and nausea, brain fog, drop attacks (you just fall to the ground suddenly), and "Meniere's Attacks" that are vertigo spells with chills, seizure-like activity, nausea, and vomiting, that last 8-24 hours (everyone is different and it changed at different times). My attacks range from once a week to once a month.  They are unpredictable and have no advance warning signs. By 1996 when I was diagnosed I could barely understand speech in my right ear, but I could understand speech with a hearing aid. About 2 years later I was deaf and had to use lip reading to understand speech. I was also unable to be around bright lights, movement, and noise for long periods, another side effect of Vestibular (inner ear) disorders such as MM.

 Fast forward to 2005. In March of that year, I had a vertigo spell that never went away. I was mostly bed ridden by it for 2 years until they found the cause-a Superior Canal Dehiscence (a holeole in the balance canal) in my right ear. I had surgery to fix it in March 2007 and am cured of that nightmare! But the surgery left me unexpectedly completely deaf in my right ear. Before I go on with that, back in November of 2005, about 8 months after the vertigo spell that never went away, I began losing my vision. Within 2 weeks I was legally blind and now have very little useable vision. I've been to an Ophthalmologist, a Retina Specialist, a Neuro-Opthalmologist, and a Neurologist, and no one can figure out why I'm blind. The Neuro-Opthalmologist wants to do genetic testing, but my state's Medicaid won't let me have it done. So I am just coping the best I can and learning all I can.  Now back to my ear. I just got a Cochlear Implant (CI) in my right ear on Aug 30th, 2007 (the first step to being assimilated with the collective for you Star Trek fans! LOL).  Right now, January 2008, there seems to be a problem with my CI and I can no longer wear it now.  I am awaiting re-implantation of the CI in hopes that I will be able to hear again.

I communicate through tactile sign or tactile fingerspelling (I put my hands over the signer's hands and feel the sign or letters) and also what is called Print-on-Palm.  You can write on my palm in capital letters and I feel them.

Shortly after receiving the implant, I did a TV Interview that you can see here (I am the third story) : http://media.swagit.com/s/wbrz/The_Advocate_Health/12112007-18.high.flash8.html

For those who need it, the transcript is at the end:

 Up until February of 2009, I slowly lost more and more vision. In February of 2009, I developed holes in my eyes and cracked lenses (a type of cataract), the cause unknown. I had 4 surgeries to remove the lenses, which they shattered them during the first surgery for each eye. So the subsequent surgeries were to remove the lens pieces. All of these surgeries were done without proper anesthesia, while I was awake and feeling some of what they were doing-when I would tell them I could feel things they just ignored me. This happened because, I was told was a nurse who assists with these surgeries all the time I was on Medicaid, and also and surgeries were all pretty much botched surgeries. I lost more vision with each surgery, and the response I got from the surgeons was "you didn't have much vision to begin with so it doesn't matter." I truly believe that they didn't take much care with me because of that thought-they certainly were very abrupt and unwilling to answer questions or explain anything to me! The fourth surgery left me completely blind in my left eye, without light perception. Each surgery also increased pain from my eyes, a feeling of having a hot poker poked in them! my eye surgeons wouldn't give me any medication for pain, either. I had some at home, but they did not help the pain at all. I had one final surgery on my right eye to try to help the pain. It left me completely blind, with light perception, and in MORE pain! I saw all kinds of specialists, but they could find no reason for the pain except the trauma done to my eyes from the surgeries, but that they couldn't help. I was told by several specialists that the only thing that would stop the pain was to have my eyes removed, that too much damage was done, and they couldn't even guarantee that that would stop the pain. But none of them was willing to do that.

 My PCP could tell how much pain I was in and took mercy on me, knowing that I don't like narcotics and don't abuse any drugs. He put me on a continuous release Morphine patch that I had to supplement with Percocet ever 4 hours, and I still had pain. The level of Morphine I was on, my doctor told me, was usually only given to bone cancer patients, as bone cancer is the most painful type of cancer. So you can use that to get an idea of how much pain I was in. I was on that for a few months but had bad side effects, like muscle tightness and restless legs. One night I was in so much pain from that, that I felt I was going to go crazy! So my doctor switched me to a pill form, called MS-Contin that slowly releases Morphine like the patch but doesn't have the muscular side effects. I had to go up to a high dose of 30 MG twice a day. All the while my husband was looking for a doctor to help me, even alternative medicine. He was suffering with me, as I would wake up screaming in pain some nights until the Morphine really got into my system. My body functions were all messed up because of being on pain killers for so long, but the pain was too bad NOT to take them.

 Finally I saw another doctor who also concluded that the only thing that would stop the pain was to remove my eyes. And he knew of a surgeon that was top of his field and whom would do it. I dreaded losing my eyes but wanted off the drugs and then for the pain to go away. This doctor fit me in and they found a spot for me to have my left eye removed-he would not do both at the same time. This doctor is booked up six months or more in advance, so I was lucky they could squeeze me in. So on October 29th, 2009, I had my left eye removed. I had only 5 days of post op pain and then ALL pain was gone! No hot poked pains! I was SO happy!!! I could not wait to get my right eye removed, which sounds weird, I know. GRIN

 During the time before the surgery I slowly lost the light perception in my right eye so am now completely in the dark. I had to wait until my left eye was healed, 5 weeks, before they would do the right one. So after 9 weeks, just a few weeks ago which I am writing this, I was completely healed and they tried to fit me in for my right eye, but the best they could do was February 2nd, 2010. So I have to stay on the Morphine and Percocet.

 I am waiting for Medicaid to approve my left prosthetic eye and then I will have it made. My Ocularist makes it all himself! I will go there and spend the day and leave with my new eye, which I am getting my natural bright blue! But because of the holidays I may not get to do that until mid January or maybe even February-but he promised I'd have it before my birthday at the end of February. So I am looking forward to that day.

 As for my CI, I am still having trouble with vertigo and trying to get a decent map. Once I am off the pain meds and have a good map, my Neurotologist will decide what to do about the constant vertigo and odd sounds I have in my CI some times. He may reimplant, but he might not. He doesn't want to make any decisions or too much speculation right now.

 Video Transcript

New technology aids Lafayette woman
 

Cynthia Witherspoon (reporter): New technology now available at a Baton Rouge hospital may help a Lafayette
woman regain something many of us take for granted.

Tonilyn lives in a world most of us cannot imagine.

Toni: When I was 6 years old I lost my hearing in my left ear completely and at
the time we didn't know why. And then when I was twelve they found out tI had a brain tumor and it was pretty big. They said I had about a week to live at the most and, that if I came out of
the surgery alive, I probably wouldn't be able to live on my own; maybe not
be able to walk and talk or feed myself. And we were prepared for that. I
knew that going in. it. And when I came out I was almost like I am today.

Cynthia: Tonilyn developed a full vocabulary growing up but her medical condition not only robbed her of hearing, today she is also blind.

Toni: It's scary, especially losing my vision. He's (referring to Keith) about the only contact I have.
 

Cynthia: Together Tonilyn and her fiance, Keith, have just about mastered a communication technique called "Graphism." Take a look at how it's done. (Note; The communication method used is Print in Palm-no one knows where she got the term "Graphism.")
 

(Shot of Keith writing in Toni's hand)
 

Keith spells out words letter by letter, all in caps, in her hand. Once she recognizes what he's written, Tonilyn responds verbally. The technique has worked well but a device like this (screen shot of cochlear implant chart)
called a Cochlear Implant will allow Tonilyn to actually hear Keith's voice.

(Dr. Tenney showing the area around Toni's implant)
In August, Tonilyn became part of history at Earl K. Long Hospital in Baton
Rouge, the host site for the first cochlear implant surgery ever in Southeast Louisiana Charity system.
Dr. Justin Tenney says the implant has two basic components.

Dr Tenney: One is implanted within the patient which is a receiver attached to an electrode device which stimulates the hearing nerve itself.
The other device is an externally worn device connected by a magnet, which
consists of the microphone and a speech processor.
(Shot of the surgery area behind Toni's ear)

Cynthia: You can see the area where Dr. Tenney performed the surgery to place Tonilyn's implant.
The device is highly successful in restoring hearing in adults and children
with severe or profound hearing loss.
Keith says he looks forward to having normal conversations with Tonilyn.
 

Keith: It'll make things easier; I don't have to worry about my spelling too much.

Toni: It'll be really good to be able to hear again. It'll give me a lot
more contact with people and communication.

Cynthia: Doctors usually wait 4-6 weeks before the device is activated. Results are
typically not immediate; therapy is required as well as time for the brain
to adapt to hearing new sounds.

(end of story)



 

You can e-mail me at pip@pipscause.org.