A new topic sub-section

[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

Russ,

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

Phyl

[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

[ceeceek]

For those of us,,when new to the site,,,I think it would be a good idea to perhaps have a seperate forum on the subject of Extreme Cases.....as long as it is used for extreme..one of the dis-heartening (sp) things I found when first on the site, was the amount of people having problems, when in actuality, many people suffer no ill effects from either surgeries or radiation treatments at all..The support has been great, but initially all the info was overwhelmingly scary....I would suggest a forum for good outcomes as well as extreme cases..or at the very least a seperate one for patients families....it is hard enought to deal with a sick family member, much less try and learn a new web site.....
Just my opinion
Ceeceek

[Raydean]

My husband fell into the 1% so I can identify with the isolation of the situation.  When outcomes are so many, beyond the norm answers are few and far between, sometimes there are no answers.  It's hard for others to understand, because the  ANer's that fall into the 1% usually have outcomes that are the ones we all fear the most. The "that could of been me".  Sometimes that (outcomes) is all other's see.  The 1%'s are often referred to as "horror stories" because that is all that others are seeing.  But you know, there is a lot that can be learned from those with poor outcomes.  The courage, adaptability, grace under tremendous pressure and losses, the strong will to live a valued life.  Having walked along side of my husband thru his AN journey his biggest desire was that others would look deeper then the outcomes and see the person that he was.   He (and myself) pushed the doctors for answers, not because it would change anything for him, but with the hope that medical lessons learned from his case would help others that followed to have better, more normal outcomes.

A safe place to be able to share, to be able to discuss your deepest fears with someone that has been there is invaluable.  To know that you aren't the only one with these problems lessens the isolation that comes with severe outcomes.  First hand i know how uplifting encouragement and a kind word can be.

There's a fine line in sharing our outcomes and  by sharing the outcomes causing undue fear. One of Chet's biggest fears was that if a person didn't understand his starting place, and all they saw was the outcomes and delayed their treatment, or changed treatment or put themselves at risk because of his poor outcomes .  He strongly felt that there was (is) a responsibility to others and for that reason never fullly shared everything. 

I don't know what the right answer or middle ground would be. I know that what we all have in common is much more then the differences and while we all have the AN in common, we are all so much more then the AN.  Perhaps a seperate Willing to Talk list  for those with severe problems.
My inbox is always open!!

Best to all
Raydean