Author Topic: NF2 webinars  (Read 4090 times)

Susan A

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NF2 webinars
« on: January 11, 2013, 07:30:54 pm »
The NF Network has posted this week's webinar from Dr Asthagiri on their website. For now it's linked right from their front page: http://www.nfnetwork.org/home (I would guess they'll move it to their webinar page eventually: http://www.nfnetwork.org/understanding-nf/webinars)

Dr Asthagiri talked briefly about what the NIH is, and then talked about NF2 and what they have found out through the Natural History Study at NIH. 155 people with NF2 have been participating in MRIs and other checkups at NIH twice a year. The major thing I took away from the webinar is that for all they've learned, there's still a lot to learn! It's worth watching the webinar though if you want to know more about NF2.

I also got a lot out of watching the webinar by Dr Slattery from House in CA on cochlear implants and ABIs for people with NF2. I'm hoping my hearing loss never gets to the point where I have to consider one of those options, but it's still good to have the info in case I ever need it!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Nannybee

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Re: NF2 webinars
« Reply #1 on: January 12, 2013, 07:06:39 pm »
Thanks Susan,
I will check them out when I get some free time. Going to see a genetic counselor for NF2 testing.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

producer

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Re: NF2 webinars
« Reply #2 on: January 17, 2013, 02:06:51 am »
Hi Susan, i dont see it on the front page nor the webinars page.. Could you post a link again if you can find it elsewhere please?

cheers


chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

Susan A

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Re: NF2 webinars
« Reply #3 on: January 31, 2013, 06:21:19 pm »
Chris,
it is linked right from their front page: http://www.nfnetwork.org/home Look for this image and click on it:, or try copying and pasting this really long link to go there directly:http://dl.dropbox.com/u/52204183/2013-01-09%2019.03%20_NF2%20Natural%20History%20Study_.wmv

Susan
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

producer

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Re: NF2 webinars
« Reply #4 on: February 03, 2013, 01:17:46 pm »
ofcourse... thank you   :)
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

 


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