Go Fund Me link: http://www.gofundme.com/o439uw
Lynn Steele – My story begins the summer of 2012. My life was full of daily activities and commitments to various community causes. What I did not know was that my life was about to change drastically. In the midst of planning three Community Day events, as well as a partnership walk between my local police department and residents I had a vertigo attack. I knew I was feeling a bit fatigued but kept telling myself “if I can just make it to September 8th”, the day of the last Community Day, I would take a break and rest. As fate would have it I began feeling ill early that morning. It started with a little dizziness then as the morning went by, nausea started. I continued to try and finish my clients but had to lay down in between doing so. That was the only position that the room did not feel like it was spinning. The symptoms got worse as the day passed. No longer was laying down an option, I finally had to call an ambulance. Once I arrived at the Emergency Room no one could tell me what was wrong at first. Hours later I was told that my symptoms mimicked a Vertigo attack. I began researching ENT specialist only to find there was a three to four month wait before I could get an appointment. Fortunately I was able to get a referral to a Specialist at Georgetown Hospital. I was told that the Vertigo attack was more than likely triggered by an untreated ear infection. The only recollection I had of any symptoms of dizziness were random and sporadic dizzy spells over a period of three to six months. The first happening when I got up too quickly, another falling into the wall while walking down a hallway, and one other time when I laid down the room started to spin. Each time I chalked it up to be I hadn’t eaten enough that day or I got up too fast. I remember Memorial Day weekend waking up with sharp pains in my left jaw. Self-diagnosing a tooth ache. It wasn’t until I accidently ran my fingers across my ear lobe that I felt a sharp pain. Not wanting to go to the doctor I took some antibiotics I already had and they seemed to cure the problem until the episode on September 8th. The doctor said it was very important that I start a rigorous steroid injections within the first 2-5 days of onset of hearing loss. Treatments were for three consecutive weeks then I would be re-evaluated. Unfortunately after the very first injection I loss all hearing and it would not return. I had a high school classmate who married an Otolaryngologist so I scheduled an appointment to see if anything else could be done to help me regain my hearing. After reading my MRI’s and previous hearing test results I was told that the steroids were the best chance of regaining my hearing. He did not think it would come back and would have probably treated me the same way as previous doctor. I started getting adjusted to my “new” norm as I like to refer to it, with little changes in my daily routines. I had to be sure to tell people to speak to me on my right side, had to be sure that when walking or sitting people were on my right side. The little things you don’t realize until you go to do something and realize you can no longer do it. For instance switching ears if you get tired of holding a phone in one ear, hearing emergency apparatus while driving, sleeping on hearing side renders you practically deaf, no longer being able to tell where sounds are coming from (cell phone ringing but don’t know which direction). As time went by family and friends adjusted and I got on with my life. I made a point to protect my right ear and be sure to recognize onset of any symptoms as random as they may be.
Then in November 2013 I raked and bagged leaves on a Friday and the next morning my ear felt as though I had been on a plane all night. Later during the day I began having problems hearing clearly. I thought it was something wrong with the sound on the television because everyone sounded like daffy duck. After speaking with a very close female friend over the phone, who has a heavy voice, she too sounded like a duck. I knew something was wrong. By the end of the day I noticed my hearing deteriorating. Earlier in the day I could hear the television on level 20 but by late that evening I could barely hear on level 50. I immediately phoned my Mom and then scheduled an appointment with my ENT. Ironically I had just had a routine follow up the week before. I went in on that Monday and he started steroid injections twice a week immediately as well as oral steroids. After the third week with hearing test showing no improvement he recommended me to a friend of his at George Washington Hospital that was part of a new treatment involving a hyperbaric chamber. I met with a team of specialist and underwent five weeks of daily two hour hyperbaric treatments along with oral steroids. Doctors were all baffled with my case since the episodes were spaced far apart and attacked my hearing so severely. One of my several MRI’s showed a mass on my spleen and a nodule on my thyroid. Doctors said it was probably a result of the steroid treatments.
Over the period of five months I underwent several more hearing test, numerous blood test for every possible auto immune disease, three additional MRI’s and consultations for hearing aids and possible cochlear implants. One of my doctors at GW was able to get me into the MAYO Clinic for further evaluation. Can I say that EVERY hospital should be run like the MAYO Clinic. From the initial correspondence with my schedule upon arrival to the very end of my visit was superior. While there for a week I met with the heads of the departments for five different specialist. Every detail was covered from scheduling a procedure not originally planned (removal of three nodules on thyroid), to follow up appointments and diagnoses. I was able to log in to my account daily and view detail results and written notes from doctors. A very well- oiled machine, so to speak, at no time did I have to wait more than ten minutes to see my doctors or for a procedure to be done.
After several consultations and talking over my options with my family I decided to get a hearing aid. My sister happened to have a co- worker whose wife is an Audiologist so I set up an appointment to discuss getting a hearing aid. As my family and I started to get adjusted once again to my hearing loss and I got back to work the unthinkable happened! After three months of training my brain to use the device I was able to separate conversations and sounds from background noises and presume a somewhat normal life. Then overnight the unthinkable happened! I started having problems hearing and thought it might be the device. I was encouraged that it had to be the device because it seemed to be positional. Meaning as I removed the aid, sound “popped” back in but as soon as I put it in my ear it went out again. The next day I got an emergency appointment with my Audiologist who changed the connections and found nothing wrong with it. The Audiologist attempts to adjust the level of sound were futile because this time the hearing loss was different. This time I could not make out the words clearly, all sounds were blurred and muffled. She had me take a hearing test and found my hearing had decreased and suggested I see my ENT and have further test. In the meantime she would order a new mold to see if that resolved my issues. I noticed she had written notes on my diagnostic sheet of “sudden severe” and extreme” but blacked out all of notes before she gave it to me to take to my ENT. I remember going to my car and falling apart before making the long drive home. What no one said to me throughout this entire ordeal was the possibility of me losing even more hearing. It was never on my radar.
The visit to the ENT proved to be discouraging. My hearing had decreased in two weeks below levels prior to last steroid treatments. So literally overnight my hearing aid was rendered useless. My only option left was the cochlear implant. He referred me to his colleague at John Hopkins Hospital. Before I left his office the doctor called back and said he would check his schedule to see when I could get a consult. By the end of the day I got a call saying the earliest I could be seen was in two weeks. That didn’t seem to be that long considering normal wait time was three months out for an appointment.
My initial visit at doctor at John Hopkins went very well. I had already begun to accept the reality of the cochlear implant being my only option if I were to hear again. He was very impressed with everything I had already done and been through to try and regain my hearing. I’d always been a little nosey so reading lips actually was a little easy for me. What helped was the fact that I could use both, filling in what I could make out with the aid and reading lips. I left his office hoping for surgery by October, because I had things to do. LOL I just wanted the process to begin so I could begin moving forward. After a couple of weeks my sister received a call on a Wednesday stating my surgery would that Friday! I had two days to get my things in order and prepare for surgery. I had already forewarned my clients I may be out for a while just not this soon!
Well surgery was supposed to be in and out and last two hours. As I have not followed any precursor I ended up in the operating room for four hours. The doctors discovered more scar tissue/calcification than they expected. That was a warning that all four of the ENT’s that I saw said would complicate or even prevent me from getting the implant. I am so thankful that I chose the doctor that I did because I’m not sure anyone else would have had the determination to get as far as he did to try to ensure I would get some benefit from the implant. I learned that he was only able to implant half of the electrodes he wanted to. I will not know how much or how effective they work until the healing process is over. As of this writing, I have two more weeks to wait before the device will be turned on and activated. I have weeks of speech therapy ahead of me and up to a year before I reach full benefits of the implant. When asked if the possibility of having to go back in was an option the doctor only said “Let’s wait and see”
I am determined to forge ahead with my healing process and adapt to my “new” norm as it comes my way. The help of modern technology can only go but so far. Situations arise unexpectedly when you are forced to recognize that you can no longer do and go as you once did. Driving by yourself, running errands, going to the mall, hearing emergency apparatus, not being able to hear someone approaching you, not hearing someone calling out or speaking to you from another room or outside of a close proximity all are just a few things that I no longer have the natural luxury to do. The need for a Service Dog will be a tremendous help and support in order for me to regain my sense of security, self-confidence and independence.
I have always relied on my faith to get me through any and all situations in life and this has truly been the reason I have not lost my mind! The support of my family and friends have allowed me to stay encouraged and strong through every curve and challenge I’ve encountered. I tell everyone what a testimony I’ll have when it’s all said and done. I don’t believe in “test” of one’s faith or God because our life has already been planned and may not be to my understanding but I have a purpose to fulfill. When I look back at my challenges, I know people were placed in my life for a reason and in due season. I was born into a family to a mother of undeniable strength and resilience; two high school friends who (one married a Otolaryngologist – who in turn referred my surgeon at John Hopkin;, the other, a doctor herself, who went with me to daily doctor appointments and explained in layman terms everything); my sisters neighbor who is a nurse that relieved my family of my care giving whenever needed; my sister’s co-workers wife being an Audiologist and another friend whose husband breeds and trains service dogs. Every one of my relationships is linked to the other in some way and has helped me to become stronger and encouraged every step of the way to fulfill my purpose.
Look what Kidz and K9’s Did for Me! Me and my service dog Sammi.
GO FUND ME LINK: http://www.gofundme.com/o439uw