NF2 - Gamma Knife 10 yr report

[tony]

I am reposting this one for two reasons
1) it is definately NF2
and 2) the 15 yr survey results will be out soon.
With any NF2 treatment the absolute stats are so few we need care
- less we base outcomes/expectations on two or three examples
wonderful they maybe, but not statisitcally useful.
If you check out Sheffield Gamma knife (Royal Hallamshire Hosp-Uk)
They have 10 yrs long term stats on NF2/Gamma treatment, 100 patients approx.
It is published on the net - I think its the only long term/many numbers
survey on NF2 I have seen.
Basically 40-40-20 is the outcome over 10 yrs
40% no hearing change, 40% down but still there, 20 % no hearing.
If you are struggling, I think I can find the link for you
Basically its not quite as good as conventional A.N.s
- but I would not really expect that - but not bad at all
the (USA) NF2 Crew simply did not believe them
Best regards
Tony
PS the update here is that the 10 yrs survey is shortly to be updated
to include the 15 yrs info - topline, no real changes in outcome
This rather confounds conventional wisdom that NF2 and radiotherapy dont mix.

[Dealy]

Tony: After reading your report this morning before I went to work- I reread the article the Johns Hopkins gave me concerning FSR radiation protocol of 25 sessions. Study indicated on this article that one sided AN's can expect 98% hearing preservation after 5 years while NF'2s can expect 64% withing the same time frame provided they have good hearing going in of course. By the way-how are things going after GK treatment-if I am not mistaken you had this recently. I am waiting on report from surgeon who did my AN surgery 18 years ago on my left. 6 month MRI report indicated some enhancement on the left side. Johns Hopkins just said-it could be scar tissue-so I am getting a 2nd opinion of sorts. Had final Spinal MRI results come in also recently-Spine is clear. Well that good news for once. Thanks-Ron

[tony]

I almost dont dare say .... but so far so good
Best regards
Tony