A thumbnail summary of an interactive colloquy session with the renowned and professed ENT specialist and Cochlear Implant Surgeon Dr. Shomeshwar Singh :

1          WHEN TO CONTACT YOUR CI SURGEON?

If there are any signs of inflammation at the implant site i.e. Redness, Swelling, and Pain. In general falls or bumps won’t affect either the external processor or internal implants. Rush to the doctor if there is any bruising or bleeding.

2          WHICH SPORTS TO AVOID?

As general advisory only contact sports with direct impact on implant sites and implants are restricted like Boxing, Wrestling, Kabaddi. Other games like football, basketball, cricket can be played with necessary preventive measures and the adjunct help of advanced accessories.

3          HOW TO TACKLE SWEAT RELATED IRRITATIONS?

Normal powders can be applied for the same after taking out the processors at night time. In general ointments or medicines can be applied on the implant site too if required if there are no signs of cuts or bruise.

4          IN SITUATIONS OF COMMON COLD AND COUGH?

Not only in cochlear implant recipients but in persons with typical hearing too, there is a dip in hearing due to cold, cough and related congestion. Parents of implant recipients need to take aggressive preventive and curative measures though and especially look for any fluid collection or infection. There is no need to panic just being vigilant is the key.

5          IN CASE THE CHILD NEEDS MRI?

All the Implant companies have stipulated well-versed document on MRI- do’s and don’ts and is provided to implant centres clinics and surgeons. MRI, if required, one needs to take a written or printed advisory from concerned surgeon or audiologist and the radiologist can decide accordingly, how to proceed the scan procedure.

6          WHAT IF THE INTERNAL IMPLANT FAILS?

If there is an internal implant failure then a revision surgery is required with ex-plantation and reimplantation of a new Cochlear Implant. As these are happening on the inner ear level it won’t affect the therapy or speech and language development as it occurs on the CNS(Central Nervous System ) level and the brain is already trained. Though any new step has its own start and will take some time to adjust and adapt to normalcy.

7          WHEN AND HOW TO DECIDE FOR UPGRADES?

It is a point to ponder upon as there are many decisive factors like age of the implantee(both chronological and hearing), the requirement of advanced technology and the new features, availability of ongoing processors and accessories on the shelf. Though it’s always good to go hand in hand with the technology but don’t be swayed away by marketing gimmicks.

8          WHAT IS THE RELIABILITY RATE OF A COCHLEAR IMPLANT DEVICE?

Every Implant company have published their own reliability report and is easily available. Nowadays with advanced and enhanced medical technology implants are expected to have a very high-reliability rate over a longer span of time.

 

The recipients and caregivers need to have a confidence in technology with the acceptance of err making human made technology. Problems do come but there are measures to tackle with. Be Argus eyed and patient.

Have A Happy Hearing!

ACKNOWLEDGEMENT:

Host of the event: Chetana Misra

Session compiled by Nayela Ahmed

Course Coordinator: Ritu Nakra

 

 

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Listening beyond hearing

 

 

 “Deaf people can do anything hearing people can, except hear!” – Dr. King Jordan

Any journey to unknown territory is scary. The excitement, anxiousness, fear, emotional upheaval and anticipation add to the drama. However once you set sail, you face the waves as they come and that is exactly what we at HearMeSpeak have done.

It has been an educative, sometimes tiring, sometimes exciting, and never-a-dull-minute kind of journey for us this past year. With wonderful and heartfelt support from parents, doctors, specialists, therapists and lovely children themselves; we have completed a year on a high.

HearMeSpeak was started as a forum to help and educate parents with hearing impaired children. The idea was to explain to them that children with hearing impairment are no different from regular children.  At the same time, the mission was to help them get access to specialists who would help them help their children overcome the disability. The goal was to separate the ‘dis’ and focus on the ‘ability’.  Together with a team of individuals who believed in the vision and shared the same set of beliefs we have come so far.

The icing on the cake for HearMeSpeak was the Audio Visual movie directed by Vernita Verma and narrated by the face of HearMeSpeak – Alpa Bhawani. The movie focussed on how parents can use every day routines to develop spoken language in their child. A big thank you and round of applause to the parents who agreed to come on camera without inhibition and share their stories with the world.

In this exhaustive but highly productive year, we have grown- not just in numbers, but also in knowledge, information and support. We started off by connecting with families of children with hearing loss. Interacting with them, helping them understand the shortcomings, explaining treatment options and therapy benefits and seeing them succeed has been gratifying. Watching hearing impaired children communicate effortlessly and normally gives us a sense of satisfaction and euphoria.

Over the past year we have connected families with professionals (both within the country and those based overseas) from this field, through our face book page. Using technology to our advantage, we have conducted online sessions through blab podcast with these professionals and empowered families. We have discussed at length on various topics including, working upon higher language goals by cert. AVT, cochlear implant and what happens after switch on, guidance from audiologist and much more. In addition, we have released blog posts on special occasions like mother’s day, father’s day, Diwali and Christmas.

What makes the journey interesting is that all the activities we have initiated and carried through have been done with unconditional love and with a will to educate our society, all free of cost. We haven’t charged any of the families involved a single fee and have given our services wholeheartedly.

As a result, our good work and good will has spread not only in India but many parts of the world too. As we celebrate our first anniversary, we are reminded that we have much more work to do and many more people to connect with.  Because like Dr Jordan mentioned, “Deaf people can do anything,” and that’s precisely what we aim to be able to do – ANYTHING!

A special mention and heartfelt thanks to Ritu Nakra, Chetana Misra, Vernita Verma, Alpa Bhawani, Dr.Mohnish, Dr.Shomeshwar, Rajiv Thakkar (Parent), Dr.Ruchika Mittal, Vandana Joshil and all those families who came forward to be a part of it. We are blessed and honoured to have your continued support.

Best Wishes

Team

of

Hear Me Speak

 

 

 

GLORIOUS HEARING

Let's spread the sound of joy this Diwali

 

I look around,

I see beautiful lights gleaming in the night,

I hear joyous sounds,

The sounds of celebration and love.

Like heaven on earth for me.

 

For it is a magical time,

For all those who love.

I can hear you laughing,

I can hear the trees whispering secrets.

I can hear the crackers wish everyone a Happy Diwali

 

That’s  all I need to listen to,

For it is a blessing.

When the day ends,

With a tired smiles on my face,

Eyes gleaming happily and,

My ears buzzing with excitement,

I shall sleep and dream.

 

I shall recall all the sounds ,

All the excitement ,

But my most treasured memory,

The sounds of love ringing through the air ,

For it is Diwali…..

Ananya Nakra

 

 

Journey of a fighter…. Ms.Neeta Mehta Parashar (Post-Lingual Cochlear Implantee)

It started in the vacations of 1989 ,when i was  on a  trip to U.S.A to visit my uncle’s house, I, suddenly  experienced  an  immense pressure  in one of my ears  while aeroplane was  landing.

My uncle being a child specialist took me to an ENT expert and after conducting several tests I was finally  given a hearing aid with which  I could  hear normally but i was extremely confused as how to react?

My classmates and school mates made fun of me saying,“  behri aa gayi ! ”

Some children used to stare at me which made me feel insulted. There were some teachers and classmates who used to sympathise with me, but that  only made me feel more pathetic

Being a shy and introvert person, I didn’t know how to express my frustration and I used to cry a lot. I stopped playing, going out and then one day, I decided to quit school.  From the next day I Started making excuses not to go to school and finally my mom got irritated with my excuses. When my dad came to know about it, he called me and said, “Beta lots of people wear spectacles, but that doesn’t mean that they are blind does it?  So the same applies to your hearing aid. You are punishing yourself without any reason or fault of yours. Don’t feel let down by any comments but face them with your head high. You are an  achiever not a coward. ”It was on t hat day, that I promised myself wouldn’t cry for this ever again.

Then as days turned into years, I completed my graduation, did some short term courses and then I finally got married.

All this while had been using my hearing aid. I always stood firm despite of receiving many harsh taunts from the world which included my so called ‘friends’. Only my parents and some college friends supported me throughout   my fight with this mental suffering.

In April ,2004, I had come back from Canada to see my ailing father. We planned a short trip to Haridwar. We were sitting on banks of ‘Har ki paudi’ ,when suddenly a guy dived into the river and the water splashed into  my ears

I experienced a slight pain which was not normal. I tried putting my index finger inside my ear to take out water but my God! I could not hear anything at all and I was experiencing a lot of pain behind my ear.

We tried seeing a local ENT doctor there in Haridwar, but it was all in vain.

We rushed back to Delhi as we all were confused what to do.

I then decided to visit an ENT living nearby who said, “ Infection ho gya hai ek hafte mein theek ho jaoge medicine khao”.

Four weeks went by, but I still could not hear any sounds. I felt like an alien who was isolated in a silent world. I was extremely confused as to what my next step should be. All I had to my advantage was lip reading and sign language.

Then my husband came back and so we decided to go to an expert.

My father in law took us to a Govt. Hospital and there I met an ENT. He advised us to go for an M.R.I scan, which revealed that my cochlea had been damaged and I was suffering from a genetic disorder so nothing could be done. It was a severe case and so, the doctor advised us to go for a cochlear implant.  I was trying to lip read and understand the sign language so I could figure out what was being said.

When I was explained about the process of getting a cochlear implant, I got scared as it was a brain surgery

My family members suggested that I should  see  a few more doctors  and have their views and then decide what to do.

During this time my son who was only 3 yrs old, got locked by me in the  balcony as i couldn’t hear him  crying and I  went inside. For 2 hrs he was locked outside crying. I was damn scared at night and I searched the entire house looking for him. It was like hell for me. My landlord came up on hearing his crying and opened the balcony door and my son came running to me and we both cried a lot. That was a turning point in my life for me and I decided to go for Cochlear Implant.

My case being ontogenesis imperfect was so severe that no doctor was ready to touch it as there were 99% chances of failure. Upon going abroad too we found out that there too no doctor was willing to perform the operation.

We normally have this notion that the doctors in the government hospital are just like that so that made me twice as confused whether to go ahead with the surgery or not .But finally I decided to take a chance! Some tests like Bera and MRI were conducted and I was given a date on which I was to be operated on.

On 12 Nov 2004 early morning 6am, I was taken inside the operation theatre and to my utter surprise I saw cameras inside .

While I was wondering what was happening a team of 4-5 doctors came in and I was explained in sign language that they were from the company and they would be seeing my operation live and this would also be shown live at their research centre, as I was the first one in India to get a cochlear Implant and fifth one in the world.

I was feeling very happy about this when  suddenly the  doctors  said that they would increase the price of implant  as I’m an  adult . After several heated arguments, things finally settled down  and I was given anaesthesia at 8.30 am and the surgery started. It went on for 7-8 hrs. My cochlea was like kneaded dough with no bones and the nerves were all entangled but God had mercy on me and I finally got implanted. It was a big achievement for me and for the doctors. After one week I had a switch on. On the switch on day, my audiologist asked me whether I could hear something.

For me it was as if I was given a new life .I was listening to sounds again but with a different chord that I had never heard before.

Now it was time for therapy. As I went to my first class, the therapist said that it would take me a year or so to listen normally to which I was shocked. Every time I heard something, like piano keys or trumpet I was always like Oh my God! But I didn’t give up and I decided to fight on my own.

I started catching different sounds at home one by one for example, standing near the door bell and asking my kid to ring it for me.

It took me 3 months to stand before the world like normal adult catching sounds even from behind me. Wow! I was an achiever. People used to ask me ye ipod kaha se liye? And aap sun sakte ho sach mein? As at that, there were not many people who were aware about these surgeries.

It’s has been 12 years now. it was not an easy path for me but I won my struggle by  facing so much torture of being taunted or sympathised with  as if they really care for me. But now I give a hearty laugh at all this .For world I may be disabled but for me I’m a much better person. It  is actually my choice that when someone is taunting me , I have the power to switch off my implant and ignore all the non sense and tensions of  the world and as person I would also proudly refer to myself as having three ears.

The Moral I learnt:  we should make our own path and walk on it with pride and always have faith in God for this is what makes you stronger.

Best Wishes

Neeta Mehta Parashar