General Category > AN Issues

A new topic sub-section

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NF-2er:
Hi;

   I was wondering how others feel about the possibilty of a new topic sub section entitled something like "AN Severe", etc. for the really challenging situations. Maybe reserved for pts. with few choices and poor outlooks and generally for those literally very afraid to the point of nearly being unable to think. Or, for those post op severe outcomes and maybe that the family might be able to post from their motel rooms ( That would require a highly visible and easy to post from section ). Yahoo groups has a small "Severe Results" group.
   I don't know... I've been reading and posting with the ANA since 1998 and if the only group member signed on in the middle of the night and that one, very much distressed post comes in, well, I've read many of those. I guess many subscribed now have also. Of course the group has blossomed from a 235 member email support group to a huge web site with well over 2000 subscribers. During those years I've read quite the variety of situations and many were dire. Eg. Being the daughter of an 80 year old Mother and discovering the Mother has a 4.00 cm AN and should she have major brain surgery at 80? Or; The time when the frantic Mother was told her 11 year old had a 5 cm. AN. There were many other similar situations.
   Not wishing it to be a depressing thing, however, I just wonder if there is room for such a sub topic?
   Thanks for reading if you have. May your days and evenings be well!

   NF-2er

ppearl214:
Russ,

Maybe speak to the forum admin/Director (Judy) as well to get their take on it..... just a thought.

Phyl

GM:
I think it's a good idea to look into...

GM

Anna:
Phyl;

   I am Ann, not Russ. Most of NF-2ers posts here are mine. We share an AOL web mail address and once logged in with Firefox am usually always logged in. Russ is busy elsewhere most of the time.
   He was searching for a familial connection to his NF-2 as had first symptoms early on at 19.
   It has probably been found in me as I reported with chronic headache 3 years ago and was MRI'd to discover my brain does not have ANs per se, but numerous white spots. There is no current, conclusive Dx. and MS was ruled out. They cannot biopsy a brain so easily on a living person.
   Russ apparently went through a prescription med reaction which really changed his behavior and attitude to the most negative and angry ever. That has since been remedied. I think he meant what he felt at the time but not to be presented so meanly.
   Little Brother has loved this group and it's people for a long while. He will no longer be posting adversely, and actually, posting little, if any. It's grown too large for his cognitive problems and becomes an easy frustration.
   I've my own log in but as long s NF-2er has remained logged in, just use it.

   Anna



--- Quote from: ppearl214 on August 15, 2007, 12:22:41 pm ---Russ,

Maybe speak to the forum admin/Director (Judy) as well to get their take on it..... just a thought.

Phyl

--- End quote ---

tony:
Hello - I knew Russ from the old group (3yrs back ?)
Please convey my best regards to him
Some on the old group were vaguely aware that the medication
was causing issues to him - I am NF2 - even I frequently forget
just how varied a condition it can be - and how serious
Finally there is a family link from Russ to "NF2er " ?
I was confused because that call sign signs off as Russ
Sorry to sound stoo-pid..
And again
Best Regards
Tony

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