Author Topic: Paris Conference (NF2)  (Read 5156 times)

tony

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Paris Conference (NF2)
« on: February 16, 2007, 02:37:13 pm »
There was a 4 day(?)  event in Paris to discuss NF2 - treatment, out comes etc etc
just recently - some suprising results
Firstly accepted wisdom is 1 in 40,000 - Evans (leading expert, manchester based, UK)
is now contradicting this - he is suggesting 1 - 25,000 is the true UK stats/av
USA may struggle to really centralise the data due to nature of the healthcare system
- the real USA figure is as likely 1 in 25,000
Secondly very anti radio therapy - no mention at all of Gamma knife options
FSR got a poor press - yet surgery hardly a wonderful (only) option
Between the offical report "Gene therapy understanding/ treatment options"
appears on the Horizon but nothing definate
They appear closer to redefining the nature/forms of the condition
(I think gene therapy may prove the least damaging treatment option
but dont ask me when)
best regards
Tony

Jeff

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Re: Paris Conference (NF2)
« Reply #1 on: February 16, 2007, 05:32:02 pm »
Hi Tony,
Thanks for reporting this. Do you have a link that I can follow to read more?
Jeff
NF2
multiple AN surgeries
last surgery June 08

jerseygirl

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Re: Paris Conference (NF2)
« Reply #2 on: February 16, 2007, 05:33:45 pm »
Tony,

Is there a website for this conference with statements, materials, consensus? I am interested in any information at all.

            Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jeff

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Re: Paris Conference (NF2)
« Reply #3 on: February 16, 2007, 07:29:38 pm »
Perhaps this is what what Tony is referring to:http://www.ctf.org/pdf/professionals/meetings/paris-report06.pdf
Jeff
NF2
multiple AN surgeries
last surgery June 08

jerseygirl

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Re: Paris Conference (NF2)
« Reply #4 on: February 16, 2007, 07:35:04 pm »
Jeff,

Thanks for finding it!

 Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

tony

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Re: Paris Conference (NF2)
« Reply #5 on: February 17, 2007, 02:00:27 am »
Wow !, er yes, there is,
and I think youve found it too !
Well Done
They had Ramsden and Evans there (I met one and have emailed with the other)
- but no-one from Sheffield who now have a 15 yr track record of NF2 treatments
with over 100 NF2 patients, (probably the largest single concentration of NF2
treatment/patients/outcomes in the world....)
 WHEN OH WHEN will our medical services
start to communicate with each other ?
- I mean, heaven forbid, we might start to get well ?
Yours, enraged, of emmer green....
Tony