CI at sunnybrook hospital

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Chris d

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Hi everyone ,I'm *new around here and got a few questions I'm hoping some of you can help me with. My girl friend was born deaf and from what she tells me ,shes used a hearing aids for the first 7 years of her life but it didn't really work so she stoped using them ever since. She is now 33 years old and we recently had are first appointment at sunnybrook hospital and the lady nurse pretty much told us that she's *not a candidate because she hasn't had hearing in such a long time ,that the part of the brain that functions for hearing is used for other functions so in other words the brain will not respond to the implant?*

My girl friends friend who is older also seen this same nurse at sunnybrook years ago and he also got rejected by the same nurse but ended up getting the implant with good results. We felt like we were rushed out and like they were trained to say this and reject you.

I'm not deaf and don't know to much about the deaf community but I thought this was the right place to start looking for answers.*

Is this true what this nurse said that the brain can not learn again after not hearing for 33 years? We have another appointment with the surgeon next month and I'm sure he's going to tell us the same thing. *Who has the Finial say if she can get the Implant? Also is there anyone else here that got the implant at sunnybrook or got rejected I would love to hear about your experience .I hope to get some replys.*

Thanks
 
Just on general principles, if there were some medical procedure I was interested in, and one doctor said "no," I would go to someone else for a second opinion.

There are a lot of threads here on CIs and who might be benefited and the various issues thereof. You might want to scroll through and see if any of them answer your questions about it.
 
In Canada, you are assigned. If you go to Sunnybrook, you don't get other choices.
 
I'm wondering what a nurse is doing determining candidacy?
 
Might be a nurse practitioner? They often do preliminary screenings for things, I think.

This is only speaking generally; I have no idea what the protocol is for CI evaluation.

Botts, very interesting about the Canadian system! Wow. I don't think I'd care for that. I have gone to doctors for second opinions; would hate the idea that I couldn't do that.
 
jillio said:
I'm wondering what a nurse is doing determining candidacy?
Click to expand...

Yes, odd. Maybe a Lady Nurse functions differently, more like a noble ENT with a CI specialization

j/k Chris :) I'd go for a second opinion no matter what when it comes to this type of surgery. Actually, we did: We went for a second consult with a specialist at a different hospital after getting full approval and the go-ahead across the board for my daughter ... just to be certain.
 
I think there are 2 people here who mentioned having their CI at sunnybrook, you should here from them for sure.
It's very nice of you that you are doing some research for your girlfriend, I think Canada have some certain regulations for CI candidates, I'm not in Canada, I leave this to Dr. Phil? (not the actual one, LOL, but our Dr. Phil here on alldeaf :))
Now I don't understand how a nurse can actually reject a patient, what are here qualifications be able to reject a patient, did you mean the audiologist?
While there is some truth to that auditory cortex in the brain may be used for some other functions not auditory (hearing) when not stimulated for long time, this is not a solid evidence that the CI would not work, many people were born deaf and got fabulous results after getting CI (but not all!), they need to spend time and energy to train their brains, this may take years but as far as I know many would take a year or so to get some good results.

I'm wondering why did your girlfriend waited this long to decide about getting a CI , you said that you are not deaf and know nothing about this deafness or deaf culture, right? How are you communicating with your girlfriend? Do you know ASL (American Sign Language)? I'm asking because she may be doing this for you and I'm worried about this fact, she needs to be very motivated to get the CI (Cochlear Implant) and CI is not a PLUG AND PLAY tool, it's something that she needs to work on it as soon as her device gets activated, which means she needs to do at least 2 hours a day of listening and rehabilitation. As a deaf person she is now, she would need to know what each sound is for, if she is expecting to put the CI and start conversation with you in the next hour then she needs a reality check, I suggest that she should get on this thing herself WITHOUT your help and do as much as research as she can, let her take her time, cancel all appointments, get online, go support groups and see what is the CI is all about and then go to the dr.
Why Am I suspecting that the nurse/audiologist saw something, like your gf is not as motivated as she suppose to be? and that's why she got rejected, did she sees your girlfriend motivated to get the CI only because of you? if yes then this is not a good reason at all. a person should be very motivated and is willing to spend time and energy for this or forget it.
Good luck.
 
Beach girl said:
Might be a nurse practitioner? They often do preliminary screenings for things, I think.

This is only speaking generally; I have no idea what the protocol is for CI evaluation.

Botts, very interesting about the Canadian system! Wow. I don't think I'd care for that. I have gone to doctors for second opinions; would hate the idea that I couldn't do that.
Click to expand...

Generally requires consultation and examination from both an audi and an ENT surgeon to determine candidacy. Never heard of the decision being left in the hands of a nurse or a nurse practitioner.
 
GrendelQ said:
Yes, odd. Maybe a Lady Nurse functions differently, more like a noble ENT with a CI specialization

j/k Chris :) I'd go for a second opinion no matter what when it comes to this type of surgery. Actually, we did: We went for a second consult with a specialist at a different hospital after getting full approval and the go-ahead across the board for my daughter ... just to be certain.
Click to expand...

Always wise to get a second opinion when surgery or major medical decisions are involved.
 
well there's not a lot of choices around here for hospitals that offer this operation and theres also waiting list etc!

Fl885-She is very motivated and very healthy and the reason why she didnt get this implant sooner was because people in her school were against it so she ignored it! Im not sure why? I met my girl friend about 6 months ago and when i met her i didnt know she was deaf and this is after meeting her with her friends more then a hand full of times. She's so normal sweet and I quickly feel in love with her! I picking up sign very quickly and i learned the alphabets within a few days after we starting dating! also i bought this sign app on my iphone which has helped me so much:P We aleady seen the audiologist and from what i see on her paper its says she's 95 dB in both ears..I'm not sure what that means?
 
Is your girlfriend profoundly deaf? If she is then she probably had very little auditory input for quite some time. And it'll probably be harder to go straight from not hearing anything at all to wearing a CI. And that's why I recommend one could wear an hearing aid as an "in between" and get some auditory input and go from point A to point B and then see where they want to go from there. Are there any current CI users out there that's currently wearing one after not even wearing an HA for 20+ years? I do not know.
 
Hi Chris get you friend to see if she can get a second opinion from Dr. Lorne Parnes in London, Ontario, I know your friend will be treated with respect there.
 
Yes if you google uni of western Ontario/ cochlear implants in sure you can get the
email of an Audi there and see if you can go there. The good thing shout toront is that there are a couple places they do CIs there. Now if you're girlfriend has hearing aids by doesn't use them I would suggest she does for the time being jut so she can get some auditory stimulation. This can better her chances at getting the CI in the future since her auditory nerve will have had recent stimulation thus a better chance of success with the implant. They are strict in Canada with giving out candidacy for CIs ..that being said I had a friend go to sunnybrook and they treated her terribly with regards to her deafness and the fact that she uses ASL ..she qualifies but she said no thanks. It's hare to get a 2nd opinion here but the only other option is emailing or calling over to the place in London Ontario or If your gf really wants it then fundraise/get a loan and get it in the states. I have a friend that got both her daughters 2nd implants done in the states
 
As a recent Sunnybrook implantee I can offer a little insight as to my great personal experience there.

My initial appt was with an audiologist, not a nurse, infact I haven't even met a nurse in that dept. A surgeon, some student doctors, two audiologists, a few administrative people but never met a nurse.

There are two audis that I am aware of Amy and Suzanne. I have had the PLEASURE of meeting both. They are both very professional and just all around nice people. There may be others as well but those are the two I know.

I had a great initial appt which ran through the standard hearing tests both aided and unaided. After this we went back to Sue's office and had a long chat about my history and I was informed that I was definitely a candidate for the CI and the rest is history.

Now my situation is significantly different being that I am late deafened and still have most(all?) of my auditory memory still intact.

I then had an appt with the surgeon at which time he made the official determination that i was a candidate for the surgery. Once again I was treated with respect and dignity (aside from having to wait over an hour past my appt time but thats normal for Ontario)...

They must have had a reason for deeming your gf to not be a candidate but at least they are letting the surgeon make the final call. I would keep that appt despite what others say and make a list of questions for the surgeon (likely Dr. Chen). Only after that appt will you know for sure if you are ruled out or in and you can make the decision to have the surgery or not....you can bail out at any time prior to the day of surgery.

If you still dont have any luck after that appt then perhaps try the London route..
 
I went through the entire process at Sunnybrook/Toronto Feb 4/07 till approval Jun 20/07.

At no point did I see a nurse. The first person I met was Amy Ng, audi who discussed using a computer screen ( I was bilaterally deaf since Dec/06). We went over a massive amount of info-over 2 hours- my history at Cdn Hearing Society/Toronto and the potential benefits of an Implant for me. At the end she said-I fit the criteria . Next appointment was Jun 4/07 re: various physical test: balance etc. Results okay for operation. Next appointment with Dr J Chen on Jun 20/07: more discussions on possible problems- approved the operation for 3 weeks later. That happened July 12/07. In the hospital overnight and activated in Aug/07. Amy Ng was with me-all the way through-mapping etc.

Obviously ,I went through the entire process- seemly very quickly. No objections from me. I know bilateral deaf are considered "first in line". Recent OHIP funding has added additional persons with "profound Hearing loss" .

How much the multiple Hearing Help classes at CHS or my Hearing file from St Michaels played-not mentioned. It was mentioned that my prior /ongoing swimming exercise was a factor re: "good health" which suggests- quick recovery. Which did happened.

I understand from a recent Cochlear Implant meeting that Sunnybrook rejects 60% of all patients referred- for one reason or other.
On the face of it getting another opinion either at London or Ottawa-they would have the Sunnybrook info in front of them. This was never discussed with me -no opinion on this as all the Ontario hospitals use the same criteria: OHIP.
I guess one can go to the US have them assess re: suitably for Cochlear Implant but I don't think OHIP would cover.
OHIP covered the entire costs-$55,000-then.- of my operation which includes Mapping etc.

Chris D if you still have questions-suggest you contact forthwith- Mr David Shipp the Cochlear Implant Coordinator at Sunnybrook. He has been there almost 20 year from the beginning.

My ongoing experiences at Sunnybrook/Toronto are positive. To me they have merited my heartfelt thanks for all their valuable help. I have already been part of 2 research projects there recently re Cochlear Implants.

Note: I have had Hearing aids since the mid 60s and went to Profound loss level 90db in the early 80s. Became deaf - right ear in Feb/92.

Implanted-Sunnybrook Advanced Bionics-Harmony activated Aug/07
 
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Chris d said:
well there's not a lot of choices around here for hospitals that offer this operation and theres also waiting list etc!

Fl885-She is very motivated and very healthy and the reason why she didnt get this implant sooner was because people in her school were against it so she ignored it! Im not sure why? I met my girl friend about 6 months ago and when i met her i didnt know she was deaf and this is after meeting her with her friends more then a hand full of times. She's so normal sweet and I quickly feel in love with her! I picking up sign very quickly and i learned the alphabets within a few days after we starting dating! also i bought this sign app on my iphone which has helped me so much:P We aleady seen the audiologist and from what i see on her paper its says she's 95 dB in both ears..I'm not sure what that means?
Click to expand...

Well Chris, I have no comment on sunnybrook
I'm late deafened, 35 going 36 years old now and lost my hearing over 10 years back, 90db both ears so your gf is somehow my range, but her audiogram for sure is different, I'm not sure how she was not getting results from HA it could happen as her audiogram could explain it, anyway, i did wear hearing aids in both ears for those 10+ years and changed it over 6 times just because I wanted the latest technology, I did pretty good and used the phone extensively, had my CI surgery a month back and was activated over 2 weeks back, my hearing test showed 10-15 db across the board one week post CI, amazing!, up from 95, I even may be hearing better than normal hearing people do (many are at 20db!!), now I need to train my brain to get to all of these sounds that even with my HA I did not hear or that the HA scanned out like background noises, imagine you are in a coffee shop with all people talking, all the noise from the capushino machines and the like, you as a normal hearing person have learned how to scan these noises out and can listen to the conversations going on, we HOH/deaf people lost this ability (lost it like me as late deafened, your gf may never had it), this takes time and effort from us to scan out all noises and learn how to hear again, so that's is that hard park, it's overwhelming.
For example: while I hear my car licking himself in the bedroom upstairs and this is good, it also so tiring for me as I have not heard these sounds for over 13 years or so, my brain is overwhelmed and I get headaches by end of the day not to forget to mention feeling nauseated all day long for some reason as I'm still 16 days post activation and I'm pushing myself so hard to learn and hear everything again.
I for example know all what are the sounds for, I knew them just 2nd day post activation as I have heard these sounds before with HA or without (before my hearing get deteriorated), but for people who have never heard the water running or the click of the mouse or everything in between, this will be a long journey for them to learn and discover, speech however will take more time for them than us, but it can be done for motivated people and I can see your gf is motivated (thanks for clearing this for me as I would hate it if a boyfriend tells me that I need to get a CI so we can communicate, LOL, while all my exes never did this but it could devastate me :() and I also think your support will mean so much for her, good luck for both of you :)
 
In rereading this entire thread:your girlfriend has been without any hearing for as you say 26 years. Why do she think an Implant will NOW be of value? As I understand the longer the time gap - the less "likelyhood of successful."

What exactly did she do with this situation for the last 26 years? Learn ASL?

From my direct experience at Sunnybrook revolved around what did I do to deal with my ongoing Hearing loss? I have been mentioned about CHS classes which showed that I "tried to deal with it". SpeechReading is very difficult-at least in my experience.

I have also mentioned I never had ANY Hearing tests at Sunnybrook-they accepted my St Michaels ENT clinic file which showed I was bilaterally deaf since December 20, 2006.

One hopes you and your girlfriend get answers from either the audis-Amy or Suzanne and then from Dr J Chen. You can also contact- Mr David Shipp if anything remains.Also, keep in the mind the rejection rate of 60% Sunnybrook for various reasons over the last almost 20 years.
No I haven't experience in being rejected It was mentioned in passing that as of last year 850 persons have been implanted at Sunnybrook from a recent Implant patients meeting.

The time for you and your girlfriend is NOW>Much success in the near future.

Implanted Sunnybrook Advanced Bionics-Harmony activated Aug/07
 
Another good question is how much of an hearing loss she has? Cause if it's only severe or possibly even mild / moderate, she may want to give hearing aids another try. As to they are better now than they were 20+ years ago.
 
Chris d-who has the final say re Cochlear Implants- the surgeon in consultation with other persons-audiologist and other who saw the patient. I understand there '"some type of committee" who meets PRIOR to his meeting with the patients. Seems logical to me. Remember the team at Sunnybrook have been dealing with this for almost 20 years. Lots of experience.

Again good luck in the discussion with the surgeon and bring up EVERY QUESTION that remains.

Implanted Sunnybrook Advanced Bionics-Harmony activated Aug/07
 
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