Author Topic: CIs in Kenya  (Read 3053 times)

dalern

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CIs in Kenya
« on: October 31, 2010, 11:40:08 am »
Hello Forumites from Kenya.  I just had to post to tell you about some interesting discoveries.  Currently I am staying at an AIDS orphanage just outside Nairobi.  The kids were standing around this morning after breakfast and I noticed one little boy standing near me who had a Cochlear implant.  I commented to himn that I knew what that was and I hoped it was helping him.  He asked how I knew and I told him I also had a hearing device and I showed him my BAHA.  He thought that was really cool and thought it was neat that I could take it off and then snap it back on.  A few minutes later he came back with another boy and told me he wanted to show his friend my hearing device.  The director of the volunteers here told me that hearing difficulties can be a big problem with these HIV infected kids.  They get ear infections and they often go unnoticed until the ears are oozing.  By that time, the kids have damaged ears from infection and often have permanent hearing loss.  They don't have the technologiy or medical expertise here to do BAHAs, butt have had to take the kids out of country for the CIs.  Cochlear has donated the devices and the medical care has also been done on a volunteer basis. 

Later this afternoon I was talking to some people that came to visit.  Turns out they were from a school for the deaf just down the street.  I also showed them my BAHA and they asked if I would come to their school tomorrow afternoon to speak to some more people.  I said I would be glad to do that.  So, I am spreading the BAHA word around Kenya, and perhaps will do more of the same when I meet with some doctors in Uganda. 

If any of you are interested in following my blog while I am in Africa, you can do so by going to http://Africapart2.blogspot.com.
~Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Kencutus

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Re: CIs in Kenya
« Reply #1 on: October 31, 2010, 12:20:07 pm »
Very interesting,  Keep us posted on your trip.  Love to hear about us spread the words about BAHA and CIs.  Thanks for sharing! ;)
"Hearing Resistance is Futile!"
Treacher Collin's Syndrome
First surgery left side 12-08, Baha Intenso 3-09
Abbutment came loose on 5-09
Bilateral Baha surgery 6-09 Baha refitted 9-09
Richard & Mark Wiet MD from Ear Institute of Chicago.

CHD63

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Re: CIs in Kenya
« Reply #2 on: October 31, 2010, 12:26:27 pm »
Dale .....

It gives me shivers (the good kind!  :)) to read about the good you are doing in Kenya!  How serendipitous for you to be placed in a location of opportunity to share your experience and therefore their possibilities for assistance.

Many thoughts and prayers for a successful trip.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: CIs in Kenya
« Reply #3 on: October 31, 2010, 01:09:11 pm »
Dale -

this is just SO cool  8)

Glad to hear you are spreading the word about BAHAs, and glad to hear about CIs exsiting in Kenya.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: CIs in Kenya
« Reply #4 on: October 31, 2010, 09:07:58 pm »
AWESOME!!  what super good things you are doing over there!

K   ;D
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dalern

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Re: CIs in Kenya
« Reply #5 on: November 01, 2010, 07:22:08 am »
[
Here is an update.  I went to the school for the deaf this afternoon.  It is an adult vocational training school.  They teach woodworking, sewing, cooking, auto mechanics and hairstyling.  They gathered all their students in a big multi-purpose room and asked me to talk to them for a few minutes about my BAHA and also how proud I am to wear it and that I am not ashamed.  Many of them do not want to wear hearing aids because they thing it is a stigma.  Those that have hearing aids have all behind the ear devices.  The audiologist interpreted for me in sign language.  It kind of freaked them out that you had to have your skull drilled, but I told them it sounded worse than it was, and that there was no real pain.  They asked many questions.  Thehy wanted to know if they could die from having someone drill a hole in their head.  I explained that it did not go through to the brain.  They wanted to know if they could play sports with it.  They wanted to know if they were born with bilateral profound deafness if a BAHA would work.  I told them it would not.  I had so many people touching my head and touching my processor, I could not wait to get back and wash my hair and clean my processor!  I gave the administrator the website for Cochlear.  They of course wanted to know the cost of the procedure and the processor.  I did tell them that some facilities and doctors will give a discount for cash paying patients and that maybe Cochlear could point them in the right direction and help them out in some way.  They have no neurotolgists here and very few ENTs.  I was so glad to do this, but also sad, because it is doubtful that any of them will ever be able to get this technology.  In a way, it was unfair, but it also gives them hope that maybe someday in the future, there will be new technology for them.  Very interesting experience.
~Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Jim Scott

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Re: CIs in Kenya
« Reply #6 on: November 01, 2010, 01:48:59 pm »
Dale ~

Thanks for the update from Kenya.

Despite the irony of knowing few if any of the Kenyan children you talked to about your BAHA will ever be able to own one, you offered knowledge, hope and, perhaps, motivation for them to seek a better life.  You did a good thing.  May God bless you for that.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ennayram

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Re: CIs in Kenya
« Reply #7 on: November 03, 2010, 07:13:40 pm »
Hi Dale,

Thank you for all of the great work you are doing. I thought you'd be interested in knowing that my Otologist ( Dr. Roland) from NYU Medical center goes over to Africa with his wife (also a doctor) and volunteers their medical services. It's really quite amazing. Dr. Roland does the Cohlear implant surgery over there and the Chief Audiologist at NYUMC actually does all of the sound adjustments over the phone. I think it's wonderful how a doctor who has such a busy schedule (head of the dept.), still finds the time to do such good work for people in need.

Stay well!

MaryAnne