Guest Blog: Lauren – The BAHA-wearing audiologist

I’m delighted to present a guest blog by Lauren, a BAHA wearing audiologist in the UK with a passion for helping young adults with hearing loss. Her story shows what a difference a little perseverance and a positive attitude can make. Today, Lauren is a successful audiologist using her own experience to help others with a hearing loss. She’s got some great ideas and is on the cusp of something amazing, I look forward to seeing what the future holds!

Hello all! So Arti has asked me to write a guest blog. At first I thought this was a great idea and I was really excited to tell you all about my experiences and my life as a BAHA wearing audiologist. I am now sitting in front of my computer with a cheeky little beer, listening to Rudimental and I don’t quite know what to say, or even where to start!

So maybe I should start at the very beginning, as I’ve heard it’s a very good place to start.

I have had problems with my ears for as long as I can remember. In and out of hospital for various operations and too many hearing tests to count. It was always known that ‘Lauren can’t hear very well’. I went all the way through school like this and eventually when I was 16 someone clicked that I had dealt with a fluctuating hearing problem for a very long time and I didn’t wear hearing aids.

My ENT consultant then referred me to Audiology for my first ever hearing aid (we decided to go for one on the right as this was my worse ear). As a 16 year old girl I think it’s safe to say I was far from impressed by the prospect of wearing a hearing aid. Even more so because as far as I was concerned my hearing was fine; I managed well in school, I had a part time job, I could hear my friends; and enjoyed all the things other people my age were enjoying. I was given a conventional behind the ear hearing aid with a mould. I don’t remember the fitting appointment very well but I do remember going home and putting the hearing aid straight back in the box and hiding it in one of my drawers. It never left the drawer.

After finishing my GCSEs I went on to sixth form. I continued to do well in sixth form as I had done in school. Then, as I was coming toward the end of my A levels I had an ENT appointment (can’t keep away from the place) and I saw a different doctor to my usual consultant, she mentioned this thing called a Bone Anchored Hearing Aid (a BAHA). To be honest, I just pretended to be interested to be polite, I wasn’t that bothered because as I said before, I could hear fine, I clearly didn’t need hearing aids. The doctor and my Mam thought this was the best idea since sliced bread and I got referred to a different consultant to talk about the option of a BAHA.

The day of the BAHA consultation came, I saw the doctor, we had a little chat and he offered me the option of one or two bone anchored hearing aids. In my head I remember thinking I don’t even want any, never mind one or two. I told the doctor I wasn’t sure and he suggested I go to a support group for people with BAHAs which was in the room next door. This was not good. It was awkward. I was sat with my Mam and two other older ladies, I think I pretty much sat in silence while they chatted for about 20 minutes about how good the BAHA is. One of the ladies told me that if the doctor is offering two hearing aids then I have to take two because that’s a good thing. At that moment in time, I still didn’t want any hearing aid at all. I didn’t need them!! I can say this all quite easily now, but at the time I was a shy 17 year old (almost 18) and still relied on my parents to help me make decisions. So if my Mam though it was a good idea, then surely it was? So I told my consultant that I’d be happy to go ahead and have two bone anchored hearing aids. In my head I remember thinking this was one of the stupidest decisions I’d ever made.

Then it came, the day of the op. I don’t remember much from the morning, but I do remember being worried about the pain afterwards. When I woke up it was alright, I wasn’t in much pain at all, I just felt a little bit bruised and a bit dazed from the anaesthetic.

So you don’t see what the abutment looks like until you have your stitches removed, but my dressing fell off and I think it’s safe to say I got quite a shock at what it actually looked like. I wasn’t prepared for how ugly it would look. They killed off the hair cells around the abutment then shaved some hair around that too, so I had this awful bald patch and the skin was angry looking and swollen. I cried a lot. I was not a happy bunny that day but my parents assured me it would look a lot better once the stitches were out and the swelling had gone down. I don’t think it helped that I couldn’t wash my hair after the op so that looked like a full on grease bomb with a bit of matted blood added in for extra measure.

In the midst of all of this I had been applying for university and was advised by my teachers and parents to let the universities know I have a hearing problem. So I did, I then went on to accept a place on a course in Leeds and was invited to a meeting to discuss my needs and apply for a disabled students grant. I went to this meeting and was asked a lot of questions about where I struggle, how I cope in certain situations and where I think I might need help. I answered these questions honestly and explained that I have had no problems at school etc. They were happy with my answers and said it didn’t appear that I would need any support at university and sent me on my way, I was quite happy with this and off I went. When I told my Mam and Dad how it had gone, they hit the roof! I was a bit confused about why they were so angry, but in hindsight I see why. I was a naïve 18 year old who had never had any support through school and was only about to get hearing aids for the first time, how was I supposed to know what I miss and what I might need help with. University is very different to school and no one told me they turn off the lights in lecture theatres!!

Eventually the day came, it was a week before I was planning on moving to Leeds for university. So it happened, I got my bone anchored hearing aids, and everything was loud, really loud. I remember leaving this appointment and my friend rang me to see how it had all gone, I couldn’t hear her for the traffic and because I didn’t hear through my ears anymore, the hearing aids overpowered what my ears were trying to listen to. It was a very strange experience. I didn’t see Audiology for 5 years after that appointment.

When I got home I took the hearing aids out and then headed out to see my mates. I didn’t wear them very much from day one at all. I would wear them for an hour at uni and then they’d be out as soon as the lecture was over. They were very helpful in lectures, I’ll give them that, but elsewhere, I could hear fine and didn’t need them. So this was my life for the next 3 years, I managed as I had done all of my life and had a little extra help from my BAHAs when at uni and that was that.

Towards the end of my first year at university I started to wonder if the course I was doing was actually the right one for me, I didn’t love it and I didn’t hate it, it was just middle of the road ok. I decided to have a look on the UCAS website. I literally clicked on ‘A’ and was scrolling through when I spotted Audiology. Clicked on that and had a read about it, then I started thinking maybe this is something I could be good at. Maybe I could train as an audiologist, surely I should be good at the job, I have a hearing problem and I have hearing aids too (even if they do just live in my bag). I decided this was definitely a good idea and so the ball started rolling.

I finished my degree in Leeds, still only wearing my hearing aids for lectures and seminars. I then started my Audiology degree. I was completely out of my comfort zone; I didn’t know anyone, I started a new part time job and Audiology was hard! After a few months in my new job I realised I was missing things and mishearing what people asked for – not ideal when you work on a pharmacy counter. This encouraged me to start wearing my hearing aids for work. So I was getting better at this point, wearing my hearing aids for uni and for work (pat me on the back please!).

Audiology was a really interesting degree. I learnt a lot and it was here where my interest in young adults with hearing problems developed. I learnt so much about my own hearing loss and what the cause was. I had no idea there were different types of hearing loss and the impact of various hearing losses on things such as speech discrimination. Some things did infuriate me; I remember a lecturer talking about how some people with hearing loss/aids may be seen as inferior by others and how it might be thought they aren’t as academic etc. It made me think about why these stigmas are around, and question how we can overcome them. Learning about my own hearing loss and its impact on my life definitely changed my outlook on my life and I felt like this information had given me a bit more control of my ‘disability’ (horrible word, I don’t use it very often). They do say knowledge is power.

In my third year of studying Audiology I had to do a yearlong placement and learn all of my practical skills. This was the year everything changed. I had to wear my hearing aids from 8 in the morning until 5 at night for placement. And I lived with a really quietly spoken girl so I had to wear them at home in the evenings too. So I went from wearing my hearing aids for a couple of hours a day, to wearing them at least 10 hours a day. I didn’t particularly want to, I just had to, so I did. I got so used to wearing them that I started to rely on them in various situations and I even started to appreciate them.

Now it’s coming up to 4 years since I did my placement and I now hate not wearing my hearing aids. It took me 5 years to realise that actually, I cannot hear very well in most situations without hearing aids. My daily routine means I get up in the morning and as soon as my hair is dry they are in and they stay there until I go to bed, that’s about 15 hours a day, if not more. Oh how times change! The only time I don’t tend to wear them is if I’m heading in to a club or a noisy bar, mainly because the music is too loud and distorted and also because I’ve had far too many drunken misses with these hearing aids…another story for another day I think!

Being a BAHA wearing audiologist definitely has its perks. I love that when I talk to my patients about adapting to hearing aids I know that it isn’t complete rubbish and I know that your brain actually does adjust. I understand that there are some places you just can’t get on with hearing aids and I can talk with my patients about this. To be honest, I don’t tell every patient that walks through the door that I wear hearing aids, sometimes they don’t need to know. I generally tell the patients who ask what it is I’ve got attached to the side of my head or patients that are struggling to adjust if I feel it is appropriate. All patients are different, some will get great benefit from this and others won’t, but I think sometimes it’s worth a try.

I recently saw a 17 year old girl for a follow up who had been given her first hearing aid. She told me she didn’t really like it and wouldn’t wear it for college because she didn’t like the way it looked. We were talking for a while and I was totally honest with her. I explained about when I got my first hearing aid and when I got my BAHA. I think she appreciated my honesty, it also took away the pressure that we sometimes put on patients to wear their hearing aids. I am a strong believer in not doing something if you don’t want to, so if she didn’t want to wear her hearing aid, then why should she? If the time isn’t right for her, that’s fine. At the end of the day, if she doesn’t want it then she is never going to learn to appreciate it, appreciation of a hearing aid is something that comes over time. I am a prime example of that. I did not need a hearing aid, why would I ever appreciate it?? Obviously, now I wear my hearing aids and I appreciate them as much as I appreciate a large glass of prosecco after a long day.

I love my job, and I genuinely think I am good at what I do. The majority of patients I see are over the age of 65. In audiology we look after children very well and we look after older people very well. I’m not so sure about how well we look after young adults with a hearing loss or a hearing aid. Just because someone can retain information and understands what they are told, it does not mean that they are going to get on well with a hearing aid or that it is something they are happy about. Maybe a little more support for young adults is essential in audiology. Hearing aids aren’t like glasses, they aren’t the norm for people my age, so why do we let people walk out of an audiology appointment with the same information with give to those over 65?

I believe that young people who visit audiology need more information. If you go through childhood having hearing problems, you grow up being told that your ears don’t work properly, or the bones don’t work, or something very vague. If you are given more detailed information it might change your approach or your feelings towards something like a hearing aid. We do have hearing therapy, but not every patient gets the opportunity to use this service, this is a shame as I genuinely believe this is something every young person with a hearing loss would benefit from.

I often think about things we can do in audiology to help young adults who use our service or those seen in ENT who have a hearing loss but don’t make to audiology. Should we make our leaflets age specific? Should we have meet and greets? Should we have events that are actually age related? Maybe we could get more celebrities to talk about hearing problems? Or even hearing protection. Should young audiologists see young adult patients? Maybe we should consider other things in appointments rather than the basic topics such as listening in background noise – what about learning how to tell new people you can’t hear very well?? There are so many things I think we could do, even if it’s just to raise awareness – people have said it before and I am going to say it again – you can’t see a hearing problem, this is as important for people with hearing loss to remember as it is to those without.

Being a young adult who wears hearing aids does mean I’m a little different to others in my age group. It does make meeting new people a little bit tricky, and I do find it a bit awkward telling people I can’t hear very well. But do you know what? That’s life, nothing is straightforward and no one has an easy run. Life is like a good cup of tea, all in how you make it!

Right, ok, so that is my story and those are my ramblings. Sorry it’s so long, I thought seeing as this was a one off I could go on, and on, and on a bit more! Just be glad I didn’t add in my dating nightmares!

Thanks for having a read! Please do get in touch if you have any questions or feedback. Thanks again 🙂

Thank you Lauren for sharing your experience!

N.B. The use of ‘BAHA’ refers to all and any bone anchored hearing aids (also known as bone conducting hearing implants or BCHI).

 

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Deafness is not something you can see, so please, just look out for those around you.

This week is deaf awareness week (4-10th May 2015 in the UK)!

My commute home from work involves the London underground which is normally just fine…But today there was an incident which reminded me of how much I rely on my beloved hearing aid.

After getting off the tube at Euston I was surprised to be stuck in a crowd on the platform waiting to get on the escalator to the main station. More tubes came and went, more and more people joined this ever-growing crowd. I hadn’t moved barely an inch and as a tiny person in a huge people-jam, I was getting scared someone might knock off my hearing aid, so I took off and put it away safely! (I should mention that my bone anchored hearing aid clips on to a screw on my head and is easily knocked off)

But then all of a sudden everyone literally jumped up and turned around and I stood there with 100 people pushing past me, thinking “what the f**k is happening”? I was about ask someone but he brushed me off in the rush… but then luckily the second lady I asked explained that a Transport for London staff member said there was another way out and we had to go that way.

I did not see this staff member and more importantly I did not hear them either. It may sound silly but I was actually scared for a spilt second when I couldn’t hear anything and didn’t know what was happening. Deafness is not something you can see, so please just look out for those around you.

It’s upgrade time!

 

I am finally due for an upgrade of my Bone Anchored Hearing Aid this year! Woohoooo! Can you tell I’m excited?!

On Monday I have an audiology appointment to review my hearing and receive an upgrade of my BAHA. Woo! Finally! Why am I so excited and relieved? Because I can’t wait to enter the ‘digital hearing’ world. Whilst I LOVE my Divino, I think I would benefit more from the new features of today’s digital hearing aids. These are things such speech recognition, reducing background noise and feedback and using the new wireless accessories.

Here in the UK, we are fortunate to have the National Health Service (NHS) – a publicly funded healthcare organisation. For me, this means I can get a new processor every few years. The only thing is, we don’t get to choose which BAHA we get. Each hospital chooses which hearing aids they offer. This all depends on costing and which hearing aid they feel is best and (hopefully) patient feedback.

Technology has improved enormously over the years (thank goodness!) – with the release of the new transcutaneous BAHAs – which use of magnets instead of a screw protruding through the skin. I think it’s time I give a brief update. There are 3 baha manufacturers.
 
The first is Cochlear. This is the make I have (I wear a hearing aid called the ‘Divino‘ which is very old now!), although I’m not  quite in the digital age yet as I’m awaiting my upgrade. The new series is called the Baha 4. This comes as a connect system – with the screw, or as the attract system – with the magnets. In the UK the BAHA attract system is still in the research stages and not widely available. I have tried the wireless accessories for the Baha 4 and I think they’re amazing – I can’t wait to have my new hearing aid so I can have the accessories that come along with it. (N.B. In some hospitals in the UK you may have to pay for these, same for my international friends too!). There’s more info on the website for you to look at. They also have a blog with patient stories you might find useful: http://thebahablog.com.
  
I’ve already been told the next hearing aid I’ll get is made by Oticon Medical. Their hearing aids are called ‘Ponto’ (I would really love to know how they come up with that name!) – of which there are different models. With the newest version, the Ponto Plus you can also use the ‘Streamer‘ to connect with wireless accessories for use with the FM systems, TV, telephone and remote microphone. They also have a useful blog: http://oticonmedical.wordpress.com which you should definitely read!
  
The last one is Sophono. They offer the ‘magnet’ solution. Not many hospitals are offering this hearing aid. But, I know one or two people with this aid and they’re very happy with it. 

As I’ve said before, each person is different, so what suits one person may not exactly be the best for you. Each hearing aid has its’ own advantages and disadvantages. Don’t be afraid to ask your audiologist questions and you can read other BAHA patient stories too.

I’ve been following other patient stories very closely so I am grateful to be in a position to know what to expect.  If you’re on Facebook, there is a fab bunch of people on https://www.facebook.com/groups/BAHA.UK/. Also follow me on Twitter to keep up with me at @Arti_K_Patel. If you’re not into social media, there is also the baha users forum.

As I’m eagerly awaiting my new hearing aid, I have to admit that I feel a bit nervous. Using an analog hearing aid for so long, I am conscious that it is going to sound a bit different. But it’s time to move on and keep with the new technology.

 

Wish me luck, I’ll be back soon to update you all! 

 

 

 

Arti’s story: Fighting every step of the way

I was kindly invited to feature as a guest blogger on the NDCS campaigns blog. Please read and share!

National Deaf Children's Society Campaigns blog

Arti Patel Arti Patel, Membership Assistant

In 1994, my parents made the biggest decision of my life. They decided I would have a bone anchored hearing aid (Baha). Today, I sit here with the biggest smile on my face and say it was the best decision they ever made for me.

I was born with Treacher Collins Syndrome and a moderate hearing loss. At 2 years old, after much pushing from my parents, I was diagnosed with a hearing loss and fitted with the behind-the-ear hearing aids. Although these worked well, they weren’t the best for me.  When I was fitted my Baha, my parents noticed a huge difference and they were very happy with the results.

Arti blog Arti, aged two

However, it wasn’t all plain sailing. First they had to fight for me to get the Baha. Then after I started school, they had to push for my educational support. It…

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Social and Emotional Support with Hearing Loss

Advance warning: I ask quite a few questions in this post as I want to hear your stories, so please do leave a comment!

When you or your little one were diagnosed with a hearing loss, were you offered any counselling or emotional support to ‘deal’ with the new diagnosis? I’d like to see how many say yes. Even people born with Treacher Collins Syndrome or parents of children born with TCS, there is no immediate emotional support offered, so where is the empathy in these situations?

I have spoken to many people about this topic and they have often said that a listening ear would have lifted a great weight off their shoulders, whether they were a ‘sufferer’ or ‘carer’. A common occurence these days, is that at diagnosis you are given any number of information leaflets. Your given lots of help on picking the right hearing aid and communicating, but what about the emotional & social effects?

In the UK, a child with a new diagnosis of hearing loss is soon afterwards seen by a Teacher of Deaf to help guide them through the long journey. Thankfully, these days there also a number of charities to help you on your way, e.g. The Ear Foundation, Action on Hearing Loss and the National Deaf Children’s Society. Deafness can be very isolating because of the difficulty in communicating. (Combined with having a facial disfigurement, there many more challenges to face). Having a hearing loss isn’t easy, there are many things to take into account which many hearing people take for granted.  Something which even I’m guilty of.  If you have a hearing loss, do see you yourself as an extrovert or introvert? I class myself as the latter; shy and quiet are words often used to describe me. Speaking up doesn’t come naturally to me, but with the support of family, professionals and friends, I get a little more confident each year.

I’m not sure how old I was, but I was quite young when I realised I was ‘different’ from my friends and family.  I wanted to know why I had my condition and hearing aids. As I looked different, I didn’t want people staring at my BAHA too, so it was often hidden away. Wearing a hearing aid makes you a brave person. It takes a lot of courage to go out in the big world and proudly show off your hearing aid. On this extremely hot day (by English standards), I’m sitting here with my hair tied up and my BAHA on show, I wouldn’t have done that at school and maybe not even at the start of my Uni years.

Many young people will go through a phase where they’ll wish they didn’t have to wear the hearing aid and will try their best to hide it away. I’ve come to accept that it’s a part of me and it’s not going away. Sometimes I wonder if I had someone help me understand this fact, like a role model – someone who’s been in my shoes, would it have helped? I wouldn’t have life without this hearing aid, my TCS makes me the person I am, so if I don’t accept it, how will other people?

Guest Post by John O’Connor: Children and Hearing Loss-There Are No Limitations for People With Hearing Loss

Perfect hearing is something many take for granted until it’s gone. Hearing loss is much more than just deafness or having to wear a hearing aid. Both younger and older adults are at risk of losing their hearing. Babies, toddlers and teens can experience loss of hearing at any stage in life. While some people are born deaf, people can gradually lose their hearing over time. Many would be surprised at how much a child’s hearing can be affected in the earliest stages of their lives.

The loss of at least 16 decibels in the area of low or high frequency hearing in at least one ear is common in children and teens. Fifteen percent of children between 6 and 19 years old have some form or hearing loss. Hearing loss affects the child academically early on in school. Children with hearing problems will have a hard time learning grammar, building a vocabulary, and other important communication skills. Children may be fitted with a hearing aid that directs sound through a microphone. Sign language is the best option for people who are deaf and experiencing significant hearing loss.

Success stories like Tamika Catchings should inspire individuals suffering from hearing loss. Catchings suffered from hearing loss as a child. Her drive and work ethic inspired her to begin working hard on the basketball court. She went on to become an Olympic Gold Medalist and win several WNBA titles as a result of her hard work. Nick Hamilton, a graduate of Kent State University, played four years of baseball at the collegiate level. He maintained a .346 batting average during his final year in school. He has worn a hearing aid for most of his life and relies on lip reading to hear what others to understand what is being said to him. Stories like these show that people who are affected by hearing los can go on to excel in many areas of their life.

EarQ, who is a nationwide supplier of hearing aids, launched a campaign called HearStrong to raise awareness about the many social stigmas linked to hearing loss. The campaign identifies “champions” who have overcome their hearing conditions and encourages them to mentor others with hearing loss. These “HearStrong Champions” act as role models for others learning to live with the condition.

Children should know that their condition doesn’t bar them from participating in sports or excelling in other areas of their lives. Parents should focus on regular screenings to help their children preserve their hearing. If you are a parent, and find that your child has suffered hearing loss, you can talk them through the situation and assure them that there are no limitations on how far they can go in life.

Hi my name is John O’Connor, I am a father, outdoorsman, sports enthusiast and passionate about living a healthy lifestyle. Check out my new blog at bloggingwjohno.blogspot.com!