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ptcallaghan

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Hey there...long time lurker, first time poster...

A bit of background on me...I started losing my hearing about 2.5 years ago after contracting a nasty cold. At first it was just a minor annoyance and gradually it kept getting worse to the point that I am now Moderately/Severely Hard of Hearing in my left ear and moderately hoh in my right. So basically I am almost deaf in my left and just cant hear out of my right...lol

I have been lurking the site off and on over the last year or so, basically since I got my first hearing aids. Unfortunately a subsequent hearing test proved that my left was virtually unhelpable with the HA, my right gets some benefit but not with speech and that is where I struggle the most.

I should note that I live in a smaller city (55,000 peeps) and our specialists are pretty much useless. The first ENT I saw (after initial loss) told me I had "Shitty luck dude" lol how professional is that. Regardless he sent me for an MRI to rule out any AN.

Fastforward a year and a few hearing drops later, on the advice of my Audi I asked my family doc to send me to another specialist....well just my luck we got a new one in town, has to send me to her instead of Toronto or somewhere that I can actually get some answers. Her diag SNHL and that I would be eligible for a HA but not a CI.

Anyways ridiculously long story short through much prodding from me, my audi and my family dr (well actually his secretary cause she is awesome)...I got an appt at Sunnybrook in TO to see about getting a CI (this was last week) and an appt with the Neuro-Otology clinic at Toronto General to see if they have any more answers for me...

CI appt was great, sat down with Suzanne and talked about my history, did some hearing tests, I think I pretty much got zero on the speech recognition tests for both ears...I couldnt get anything without lip-reading. After all that she said my hearing isnt too bad in the right (not sure what that means and didnt get a copy of the audiogram) but that since my speech recog was so low that I would be a candidate for a CI after completing a bit more testing. (balance test (already completed earlier in the summer) and a CT scan).

So I told them to book the CT scan and am waiting on them, in addition to my appt next week at TO General.

She explained that Sunnybrook has pioneered a new surgery that uses a really fine electrode and preserves what remains of your hearing in the implanted ear. I believe she said the implant had not been FDA approved for use in the US yet. It was a Med-El implant and thus if I want to keep what little hearing I have, I have to go Med-El...

Anyways, thats all I have to say for now...I look forward to participating on AllDeaf.
 
welcome to AD!
we know a someone who's experienced with the Sunnybrook homies LOL!!!!!

make yourself at home :D
 
I know more than one person who has experience with Sunnybrook. One person is very happy with his CI, and the other decided not to get one.

Good luck to youl. :)
 
:welcome: to AllDeaf forum. That is up to you to decide if you want CI or not. I don't think I have never been to Sunnybrook. But keep lurking around the forum by reading and posting all the threads here. See you around here. :P
 
welcome to AD. can't help you much since you are canadian and my reference source for canadians is Possum Lodge
 
Bottesini said:
I know more than one person who has experience with Sunnybrook. One person is very happy with his CI, and the other decided not to get one.

Good luck to youl. :)
Click to expand...

see? she knows more than 1 peeps with the Sunnybrook homies LOL :)
 
Hello there!! I reside in Toronto, ON and we do have quite a bit of Toronto peeps here.
 
Yeah you are right Mrs Bucket- I have commented many times here about my experiences at Sunnybrook/Toronto. I live in Toronto. I had Amy Ng. audiologist and Dr J Chen-surgeon- did my Implant operation. They suggested Advanced Bionics-Harmony for me-3 1/2 years ago which I am quite satisfied with-so far. The Cochlear Implant/Sunnybrook is a section of the ENT department but is separate. I was referred to it from ENT St Michaels/Toronto and didn't have any hearing test whatsoever there. They accepted I was bilateral deaf-Feb/07, Still have high regards for their service to me. Welcome ptcallaghan to Alldeaf.com.

Implanted Advanced Bionics-Harmony activated Aug/07
 
ptcallaghan said:
She explained that Sunnybrook has pioneered a new surgery that uses a really fine electrode and preserves what remains of your hearing in the implanted ear. I believe she said the implant had not been FDA approved for use in the US yet. It was a Med-El implant and thus if I want to keep what little hearing I have, I have to go Med-El...
Click to expand...

For what it's worth - I wouldn't make the "promise" (or really high chance) of preserving remaining hearing as the reason to pic one brand over another - I'm quite sure that any "major breakthroughs" in actually restoring hearing (organically or otherwise) will be able to overcome the hurdle of "no residual natural hearing".

To me, there's no point in choosing something solely because of what "might happen in 20 or 30 or 40 years" if it means that DURING that 20, 30, 40 years you have to put up with something you would have (future promises aside) not chosen as your first choice.

That being said, the 3 approved brands ARE all very good - so I don't think one can choose "wrong" really, just that it's important to look at what is currently available, and what hardware/software upgrade compatibility the various brands have using the same implanted technology (instead of possible treatments that are entirely different than current CI methods)

JMHO
 
That is not my experience at Cochlear Implant Sunnybrook/Toronto at all. On the face of it seems strange to remove the Implant and re use a Hearing Aid. I clearly understood the operation as such destroys all future hearing possibility. Perhaps was Suzanne Stewart was misunderstood.

Implanted Advanced Bionics-Harmony activated Aug/07
 
Don't think it matters . They made one post and never came back.
 
Hi all,

Thanks for the warm welcome. I have been busy with work and havent been back lately.

I had my appt at Toronto General last week and saw Dr. Pothier and Dr Rannalli. Unfortunately they took my case history, performed a few balance related tests and basically told me they were stumped as to why my hearing continued to decline. They did however agree that the initial loss was likely viral.

Not really the answer I was hoping for......but exactly what I expected. I wish it was easier to pinpoint the exact cause, but the truth is they dont really understand what happens in cases like mine.
 
Dr Phil et al..

Perhaps what i wrote was a little misleading regarding the preservation of residual hearing.

Put it this way, my left ear (worst) has very little "useful" hearing. I only get the very low frequencies and only those at a high volume. When doing the "beeps" most of the time I had to ask her to stop because it was physically painful, but still couldnt hear anything.

So, in my case, if they were able to preserve some or all of this hearing....is it going to benefit me???Probably not, however, they are the "experts" and no matter how much reading I do about the various products available, they will always know more than I do. ...

Certainly if only one person recommended that product...I wouldnt take it with a grain of salt...I have my appt with Dr Chen in January and I plan on going prepared to discuss all the options with him, in addition to doing my own research in the mean time.

Sunnybrook currently only deals with Med El and Advanced Bionics...so I have to decide between the two..

Certainly this has nothing to do with possible removal of the implant at a later date...my "natural" hearing is shot and barring a miracle it is not coming back. I am not sure where that idea came from. The implant will be for life.

If you read the MedEl website they talk a bit about their electrode and how it is "less" likely to damage the internal workings, thus "possibly" preserving some hearing.

Aside from MedEl being less popular, their doesnt seem to be anything worse about their product. The majority of the comments I read ruling them out is due to the bulkier BTE processor...like all consumer products there are going to be visual differences, but it is what is inside that counts...

Having said all that, I havent made my mind up one way or another yet...aside from that I am 99% sure I will get implanted.

I dont mean to stir the pot, just repeating what I was told by Sunnybrook....

Dr. Phil your implantation was also done a few years back...I dont think this MedEl electrode was available then,....sounded pretty new
 
You are correct-the Implant operation was performed July 12,2007. In difference to you at NO time was "which processor I wanted" discussed. I have already stated many times unable to determine which was "best for me". I have also stated that I never heard of Advanced Bionics or Med El but did have A Cochlear Corp booklet on the entire operation and how their implant worked. As for Med El electrodes no opinion. I am bit surprised that Sunnybrook/Toronto doesn't use Cochlear Corp Implants Of course, no real concern as I have Advanced Bionics-Harmony.
Good luck with Dr Chen in Jamuary/11. Yeah I was bilateral deaf in the June/07 meeting-did I miss something? Still high regards for his service to me.

Implanted Advanced Bionics-Harmony activated Aug/07
 
I know what you mean about thinking you may have missed something...thats why I always bring along my awesome fiance just in case I either miss something or get confused. At least then i have a second opinion...kinda funny when I catch something she doesnt though..

I guess the hospital bigwigs that do the purchasing decided against Cochlear (likely financial based on the money they are getting from the province) for some reason...but since that decision was made...I only have the two possible choices as I will have to have the surgery at Sunnybrook due to the way our health care system works.
As to how much choice I have....not sure all the audi talked about was MedEl, perhaps I need to email her and see if AB is even an option at this point..

I have yet to find anything really negative about any of the 3 companies so which ever I end up with, I am sure will be an improvement over where I am now.
 
Sunnybrook/Toronto is the designated section of Ontario for Cochlear Implants. Yeah they have a budget and can only do so many implants per year. They have to chose who can benefit from one. You are right-OHIP picks up the bill. In my case $55,000. CDN- 3 years ago. Last year at an Implant patients meeting Sunnybrook advised that they had implanted 850 persons over the 18 year period with a reject rate for one reason or another of over 60%. They expect that the thousandth one will be will sometime in 2011,
I had Amy Ng from the start to finish and don't recall talking about which Implant i wanted/preferred. She keyed on her computer screen originally and I had to remind Dr Chen I was bilaterally deaf in the June/07 meeting. Glad that I had to wait only 3 weeks for the operation! Yeah-he wrote for me. Seems I have survived-so far.

Implanted Advanced Bionics-Harmony activated Aug/07
 
Welcome to the Ontario thread. Cheers in Beantown (Boston?)

Implanted Advanced Bionics-Harmony activated Aug/07
 
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