The joy of hearing - again!
Wendy's story is about sudden deafness as a side-effect of her life saving surgery to remove a massive brain tumour. Her Baha gave her hearing back and it just gets better and better. "I recently upgraded to a Baha Intenso from a Baha Divino and the change for me was dramatic. I have been 'in love' my my Divino since receiving it several years ago but was recently given the opportunity to try out the Intenso. To my great joy it's remarkable, especially when I honestly felt that my hearing couldn't get any better. In the mornings, as soon as I wake up I put on my Baha. I used to put my finger in my good ear to make sure that the Baha Divino was working and to make sure the batteries weren't flat. Now I put on my Intenso and I have to turn down my radio, it's 'intensly terrific'. Everything is so clear, so much louder and the benefits are enormous. My family have all become yellers and until receiving my Intenso I appreciated it, now it drives me crazy, I spend most of the time saying, "Shhhhhh, PLEASE!" I know this will be hard to believe but my hearing is better than it ever was, even BEFORE I became hearing impaired. There is no guess work any more, my confidence levels have improved so much at work, I know who is saying what and what is required and I just smile so much more. People find my smile infections, they are all so happy for me and so are my family and friends. When you think that things cant get any better, think again, Cochlear should be congratulated for the technological advances that they continue to strive for. My gratitude is endless."
Wendy tells her story.
"For many years I had been visiting my local doctor because I often experienced dizziness and kept falling to the right. At one visit the GP told me to "just rest up a bit and not to worry", and at other times I was told I had "low blood pressure and it was caused by living a busy life". However, when nothing improved I started questioning their diagnoses.
"I was a 42 year old happily married mother of two beautiful children. One day when I collapsed I insisted my husband take me to hospital. Here I was told I had very high blood pressure and should go home to rest but, because of my history, I insisted on seeing the head of casualty who asked me to do a few very simple tests. From the results of these tests, she immediately sent me for an MRI and it was found I had a very large brain tumor. I was sent to a neurosurgeon, and this nice man, when he saw my MRI, couldn't believe I was actually still walking and talking. He took another MRI straight away to confirm the size of tumour and then referred me for a second opinion. Two weeks later I saw this doctor who told me the tumor was inoperable and there was nothing I or they could do. But again for another opinion, he sent me to a major hospital which was undertaking a new treatment. Here they would see if I could be fitted for a device which would give me focused lazer radio therapy. However, they didn't have the equipment in my size and it could take 6 weeks or longer to come from America. I didn't want to wait that long and somehow deep inside I didn't feel that it was right for me. So again, I went to a different neurosurgeon and once again I was told the tumor was inoperable.
My husband was amazingly supportive and didn't flinch whenever I phoned him at work to take me to another doctor or hospital.
By now I was at the end of my tether and decided one last try at St.Vincents Clinic. Here, the neurosurgeon became my guardian angel with huge wings. He organised for a group of other guardian angels to operate, which is what I wanted, because I honestly believed if they could just get some of the tumour out I would have longer with my family. We made a date and I had the surgery (much to everybody's horror) and ten years later I am still here to tell my story.
After surgery I had several problems, all of which I worked extremely hard to fix. My balance was shocking and I looked drunk. My eyes were spinning and I had double vision plus I was deaf in my right ear. I had to re-learn a lot of things that everyone takes for granted and which were once quite normal for me. But I was determined to give it everything I had; after all I had been given a second chance at life and I wasn't going to blow it. I was in hospital a long time. I worked on my balance and received glasses with multi focal lenses and prisms which helped my vision problems. This meant I was able to re-learn to drive and eventually I was able to return to work.
My single sided deafness was a consequence of surgery because a large section of my skull had to be removed to access the tumor. But in the big picture this deafness really was minor because I felt I was incredibly lucky to be alive, to be a mum, wife, sister, daughter and friend. For years I lived with this deafness but kept a look out for something that might fix it. In time my hearing loss made my job of working with students with learning difficulties harder and I annoyed everybody I loved because I was constantly saying "I beg your pardon, could you please repeat that"!
My life had changed, a hearing aid wouldn't help me, I wasn't suitable for a Cochlear implant so there seemed little hope of me regaining my hearing.
"However, my audiologist told me about the Baha - a new technology from Cochlear, being pioneered for people with single sided deafness like me. Baha is a two part hearing solution. A small abuttment is inserted shallowly into the skull and a processor which is clipped onto this abuttment. The processor sends sound vibrations through the abuttment into the skull and to the hearing nerve rather than through the middle ear - the section of my ear which had been damaged during surgery. The picture shows the processor clipped to the abuttment and demonstrates how the sound waves travel to the hearing nerve.
"Once I was assessed and found the Baha was likely to work for me, I was eager to hear again and wanted to go ahead as soon as possible. The first part of the process involves the insertion of a titanium screw into the skull by a surgeon under anaesthetic. Later, after the healing process, a small box (the processor) is clipped onto the screw during waking hours. The picture shows a small black Baha processor attached to the abuttment. Theoretically this would allow me to hear again.
I was eager to hear again and wanted to go ahead as soon as possible
"Of course, I was a little apprehensive when I thought of a titanium screw being placed into my skull and a little scared. But that feeling was short lived when this relatively simple and non-invasive procedure was clearly explained. My surgeon was sensational, nothing was a problem, and he was there for me when I had a worry or a concern and always made time to see me. He answered a multitude of questions, gave me loads of information, was very caring, sincere and totally professional as were the girls that support him in his office.
"My surgery was effortless although the site was a little painful when the anesthetic had worn off, but all I needed was a Panadol for a day until it felt better. For the first week after the procedure I felt a little uncomfortable but then the plate that covered the screw was removed and my head felt much better.
"I couldn't hear straight away because I had to wait for the insertion site to recover and make sure no infection had occurred. My husband was my great support, both in my decision to go ahead with the Baha and in helping me to recover. He was meticulous, cleaning the area regularly and ensuring that an infection would not delay my connection. We used a mild antiseptic once a day and I had several post-operative 'check-ups' with my surgeon. I was so afraid of knocking my new abutment after surgery. I had to be very mindful to take more care when brushing my hair, removing polo neck jumpers, getting into and out of the car and after switch on, remember to take it off before showering - thankfully my shower cap saved me on several occasions. I washed my hair regularly but waited for about 6 weeks before I had it tinted and foiled. Three months after the procedure, I returned for my Baha processor fitting.
"From the second I was 'connected' I could hear, I had tears of happiness because it was the first time I felt 'normal', my husband was as excited and as relieved as I, it was a new beginning for us, it could only get better from now. I felt the luckiest person alive. While not perfect on day one it was wonderful to be able to hear from both sides again. After the fitting my husband took me to Westfield Shopping Centre. The noise was so loud and confusing and I felt sick, disorientated and very disappointed. But, after only 5 days, my brain started to tune out the background noise.
"The following weekend we took a well earned break. On our way down to the south coast, my husband could hear a noise he thought was coming from the engine, just a quiet whistling noise. I reassured him that it wasn't the car, it was my Baha, I adjusted it and turned the volume down and the noise went away.
"This trip was my first real test of my new hearing and it was wonderful. I could hear joggers coming up from behind, waves crashing on the beach, the waiter taking orders, the TV programs, and have a conversation with my hairdresser. Communication had become a joy again. [I still haven't taken the smile off my face].
"When I cuddle my beautiful children [one is 6'3"] my Baha squeaks and we laugh a lot because it's really funny. We call it my 'hug squeak'.
"I have returned several times to my audiologist for a few minor adjustments and this has made the 'screaming' noise go away.
I let the puppy live!
"Because I am so dependent on my Baha to hear, one thing I fear is that my processor may be damaged and I'm forced to be deaf until a replacement is available. Well one day my fear became reality when my son's new puppy ate my processor. (She is still with us and continues eating shoes and glasses but we love her.) At that time the Cochlear "Baha Devino" had just been released and my new processor was the latest technology. I found the difference between my first and second processors amazing. The "Devino" uses digital technology and is a Rolls Royce compared to the earlier "Compact" model. As a result my hearing is so much better. I also enjoy the extra features which are incorporated in this model.
"Each evening the Baha processor needs to be removed and placed in its Dry Kit to remove any moisture. It uses Zinc Air Batteries No: 13 which come in packs of 6 and each battery lasts about a week. I have to remove my Baha before showering, swimming, exercising or when out in the rain and regular cleaning around the abutment area with a very soft tooth brush avoids skin growing over the abutment.
"There are about nine eminent surgeons who practice this procedure in Sydney and many in other states of Australia. St. Vincents Public Hospital holds a Baha Connect meeting which gives people considering a Baha, lots of information and support. I have met many people, two of whom were considering bilateral Baha's.
"For the past eighteen months I have been asked to meet people who are considering the Baha but want to talk to someone and see it for themselves. I also encourage them to involve their partners in the entire process because the support my husband has given me has helped make my Baha such a success.
"It usually takes me about an hour to 'show and tell'. I have met people from country areas, driven to Bomaderry to meet an older gentleman, had coffee with others all over Sydney and many people have come to my home. They have a poke around my head, look at the Baha and ask a multitude of questions that I always answer with total honesty. 98% of people, after talking with me, have decided to go ahead.
"Cochlear in Lane Cove regularly holds conferences and workshops and I have told my own story at these functions. I also met the Queen of Sweden at Cochlear during her visit to Australia - which was fabulous. Another highlight was giving a talk at the Cochlear AGM in front of 600 employees. My story was featured in the Cochlear quarterly newspaper and I have undertaken Cochlear Awareness Network volunteer training to help me tell my story more effectively.
"I look forward to helping others who are considering having a Baha implant. Funnily enough, I now look forward to a little peace and quiet occasionally so I simply remove my processor and enjoy silence, for the first time in nine years. I still enjoy sleeping with my 'good' ear to the pillow, my Baha safely tucked away in its dry store and I hear nothing whatsoever, no dogs barking, sirens, cars etc, it's fabulous.
"Finally, my experience has been sensational and I know many people who feel the same. I am a very positive and outgoing person who relishes the good things in life with much optimism. I can't promise that it will be as wonderful for you as we all have different causes of deafness, but the sooner you become 'switched on' the better it will be because statistics show that the longer you wait the less benefit you will get. I can only hope and pray that you are as fortunate as I am.
Kindest regards and warmest wishes from Wendy
PS: For technical advice or any other enquiries please talk to a surgeon or audiologist or Cochlear Limited at Lane Cove as they are the very best at what they do and they are the leaders in their field. If, by chance, that you do not have your own surgeon or audiologist Wendy has a list of eminent professionals who can help you with any enquiries.
Wendy's story has been published:
- BUSK UK Website May, 2007 BUSK website
- Acoustic Neuroma Newsletter May 2007
- Better Hearing Magazine June 2007
Other stories by Wendy
- The Baha gave me back my life
- Article published on-line in Disability News
- Article published in BHA 2007
- Article published in TheSenior 2007
- Article published in the Cochlear Newsletter 2006
- Article with the Queen of Sweden