Cochlear Implant surgery finally comes to Montreal

“Blindness separates people from things;
deafness separates people from people.”
Hellen Keller

While I was never totally deaf, I was born with a severe hearing loss which eventually progressed to profoundly deaf (one step away from total deafness) so I can relate. Like most people with a serious hearing loss, I was shy and very quiet at social gatherings. Luckily, I married my wife, Doris, and she was my ears in most social situations.

In 2004, I finally got my first cochlear implant and my life changed dramatically. Suddenly, at age 57, I could hear better than ever in my life. I ran for Mayor of Hampstead and happily chatted with hundreds of residents as I went door to door. One of my supporters, Bonnie Wolman, came up with the slogan – “He listens.” Indeed, I did and I was elected and served 16 years.

I became President of the Cochlear Implant Recipients Association (CIRA) and shortly after my election as Mayor, I was approached by Dr. Saul Frenkiel, my ENT doctor, a Hampstead resident and supporter. Dr. Frenkiel explained that he and a group of doctors wanted Quebec to allow cochlear implant surgery to be preformed in Montreal. At the time it was only done in Quebec City which is where I had gotten my implant. He asked if I would help and, of course, I said Yes.

The program in Quebec City is excellent and even unilingual Anglophones like myself will find that everyone speaks English. The problem is not language but accessibility. One or two trips to Quebec City are required for assessment, another at least 2-day trip for pre-op and the surgery and then yet another trip of a week or more for the programming of the speech processor (the external part that works with the implant). For some, they cannot leave work so often. Others have young kids which they cannot leave. Some are afraid to have serious surgery done where they do not have a support group. It is a major hardship for many and some even decline this life changing surgery. Ontario has 5 centres where they do CI surgery while Quebec did not even allow it in its metropolis.

The doctors’ group prepared a detailed report and tried to convince the government. We did get funds for the rehabilitation, which can take weeks or even months, to be done in Montreal but nothing else. Over the years other attempts were made to no avail. Finally, as 2018 arrived with an election at the end of the year, we realized that we would never have a better chance. I spoke to Premier Phillipe Couillard several times and also to Health Minister Barrette on other occasions. Basically, they kept stringing me along but as the election got ever closer, nothing concrete was proposed.

While lobbying the government, I also approached my fellow suburban Mayors for their support and they all signed on. Then I spoke to Montreal Mayor Valerie Plante who was moved by the issue. She in turn got the CMM (the organization of the entire Greater Montreal region with 4 million residents) to pass a resolution calling for the surgery to be done in Montreal as well as in Quebec City. Yet, it was still not enough.

A breakthrough

I then got a contact for Benoit Charette, the CAQ MNA for Deux-Montagnes, and now Minister of Sustainable Development and the Environment. He was very receptive and promised to bring the proposal to the CAQ’s platform committee. At the same time, I organized a press conference for a Monday two weeks before the election. Mayor Plante gave me the use of Montreal’s press conference room. By then I had met Dominique Godin, a councillor for Beaconsfield, with a child with implants. She had a group of parents of kids with implants and they agreed to come to the press conference with their kids. Cute kids always get the media’s attention and they did. My son, Craig, did a web site for CIRA and prepared a bilingual poster saying “Banned in Montreal. Why?” Several doctors were speakers as well as Dominique and myself.

On Sunday the day before the conference, Benoit contacted me to say the CAQ had put a promise to do the surgery in Montreal as well as Quebec City into their official platform. The next day, I happily announced that development and Benoit was in attendance.

The CAQ won the election easily in 2018 and true to their word, they followed through with the budget for a CI program in Montreal. Then Covid got in the way but now the program has begun. Assessments of potential patients has started and the first surgeries should be done early in 2023.

What you need to know

If you or a loved one may need a CI, here is what you should know. Implants are only available for those who cannot hear in a quiet room without lip reading unless the words are repeated over and over even when good hearing aids are used. That is simple description of profound deafness. If your hearing is not that bad, you may not qualify. I always recommend that those who qualify, get the surgery. While the gains vary from person to person both in amount of gain and in speed of getting to the max, I have not heard of anyone who regretted getting the surgery.

I have now had a second implant in 2018 on the other side and the surgery which was easy in 2004 is even easier and faster now. All surgery has risks but, in my view, the risks and negative side effects are small compared to getting the ability to hear. However, each person must make his/her own decision.

The steps

First, see an ENT doctor to see what the doctor recommends. If a CI is recommended, make an appointment with an audiologist at the MacKay centre for a more detailed assessment and guidance on the next steps. For Francophones, contact an audiologist at the Raymond Dewar Institute.

If you are approved for an implant, you will be scheduled for pre-op tests and surgery. The surgery will be done in the Royal Victoria Hospital for adults and the Children’s for children. Several Montreal surgeons are qualified and they come from a variety of hospitals, not just the two at the Glen. Eventually St. Justine’s and the CHUM will probably also do the surgeries. You will probably be able to return home the day after the surgery or maybe even the same day. You can discuss possible negative side effects with the surgeon but most are rare and/or short lasting. I basically had no negative side effects worth mentioning.

After a period of time up to one month, you will have an appointment to get your speech processor and you will work with an audiologist to program the device for optimal performance. You may have up to 5 sessions over a week to have the programming done. Be aware that between the surgery until you get the speech processor, you will be totally deaf in the ear on which the surgery was done. After you get the speech processor, your hearing will be very weird and not very effective without lip reading. Don’t be alarmed but get to work with listening to people or maybe a TV news channel while lip reading. This is how the brain learns to interpret the signals it gets from the implant. There are also apps that you can use for training and practice. This is what rehabilitation is all about. The more work you do the faster you will learn to hear and the better your hearing will be. I was very lucky and after my first implant, I was hearing on the phone with no lip reading after only 5 days but most people will need more time. Still, you will get there. If it takes a few months, that is nothing compared to being able to hear for the rest of your life. The programming and rehab will be done at the Mackay (English) or Raymond Dewar Institute (French). You will also be given assistive listening devices for special situations.

I am happy to communicate with anyone considering an implant. I can be reached at (514) 483-6954 or Bill@BillSteinberg.ca.

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9 Comments

  1. What a great story and display of perseverance.

    Actions as such is what makes things happen for not only yourself but for the benefit of all here in our province and sets an example in our country.

  2. Thank you and let me add that everyone involved was not doing it for ourselves. The doctors have more than enough work. I had already gotten my two implants. The parents for the most part had kids who already had implants. We were all motivated because we knew how life changing an implant is and wanted as many people as possible to benefit.

  3. I have just had a implant, at 91. The travelling back and forth was the hardest part of it: my daughter, as the “accompanying person”, became ill on our last day, as we took our train back to Montreal; I contracted Covid two days after she did. As you said, the staff in Quebec City were extremely good, and all of them spoke to us in fluent English — pretty important for a cochlear implant. I am learning how to hear again from the wonderful staff at the Layton-Lethbridge-Mackay Centre. It is hard work, but being able to hear again is definitely worth it.

  4. Bravo! It takes courage to go to Quebec City at 91. You made the right decision and your hearing will keep improving.

    For readers, note age 91 and the surgery was still safe and effective. For those in the Montreal region now it will be easier and probably faster.

  5. Congratulations! Thank you for your efforts and letting us read about them!
    Anita Szabadi-Gottesman

  6. Thanks for sharing such an interesting & valuable learning story, to…never give up and stand up for just causes.
    Kudos to you!

  7. Bonjour Bill,
    Audition Québec aimerait reproduire l’article sur toi écrit par Hellen Keller dans notre infolettre de février. Est-ce qu’on peut avoir votre approbation?
    Salutations
    Michel Nadeau

  8. Yes, you may reprint my article as long as you mention it was by me, Bill Steinberg and that it is from my blog, “Bill’s Uncommon Sense” which can be found at BillSteinberg.ca

    Just to clear up a little misunderstanding – Helen Keller is the author of the quote that is at the top of my article. She was both deaf and blind starting at age 19 months. She had an incredible life and died in 1968. You can read about her on Wikipedia.

    Oui, vous pouvez reproduire mon article à condition de mentionner qu’il a été écrit par moi, Bill Steinberg, et qu’il provient de mon blog, “Bill’s Uncommon Sense”, qui se trouve sur BillSteinberg.ca.

    Juste pour dissiper un petit malentendu – Helen Keller est l’auteur de la citation qui figure en haut de mon article. Elle était à la fois sourde et aveugle à partir de l’âge de 19 mois. Elle a eu une vie incroyable et est morte en 1968. Vous pouvez lire à son sujet sur Wikipedia.

  9. Dear Bill,
    As always, I truly enjoy reading your blogs. Your courage, your decency and your determination to better the lives of others shines forth. I’m so happy for you that your hearing has been so miraculously provided. I love that you credit Doris!
    Best regards,
    Hildie

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Picture of Dr. Bill Steinberg

Dr. Bill Steinberg

Dr. Steinberg has a BSc from McGill University, a PhD in Psychology from Northwestern University, and was a professor at Concordia University. He was Mayor of the Town of Hampstead for 16 years and led the demerger battle. He was was awarded the Queen Elizabeth Diamond Jubilee Medal and is currently President of the Cochlear Implant Recipients Association.

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