My Facebook Phobia

[Guest guest]

Tricia, you wrote about the shock of seeing a new surgeon and getting a

recommendation for more revision surgery to correct a failed fusion. I

hope you have found someone good for a second opinion by now. You are so

right not to rush into major surgery after consulting with just one

doctor. I personally find it amazing that people hear such different

things from different surgeons -- it seems to be a reflection of how

little we (that is, our medical advisors) actually know about our spinal

deformities after all this time.

In writing about your experience, you mentioned in passing:

> I already posted this on facebook page but not sure if everyone is a

member there.

You and me both! I can't really tell how many of us are involved with

both groups, or " who is reading what and where. " I guess it's no secret

that I am, ahem, sort of ambivalent about the whole Facebook idea --

even though I finally decided we'd better get on the bandwagon and open

up a Feisty outpost at FB. , who is such a trooper, spent a great

deal of time and effort setting us up over there, and I am very

grateful. I am also grateful that has been checking up on that

group and has gone in and done battle in response to weird or

questionable posts. That has given me the luxury of playing " diplomat "

and trying to find some good in people's wilder comments, although I am

wondering now if I should maybe go stomping in there in a more assertive

way. I am still fuming over one post I read late last night which I

felt I could not begin to question or correct -- the person seemed so

sure of what she was saying, although most of it made little or no

medical sense to me; and because she was in that vulnerable,

scared-witless phase we've all been through with our flatback, I

chickened out and did not really question any of her highly questionable

facts. I am torn between alienating however few people may have signed

up for the Feisty Facebook group and spending way too much time

correcting all the misperceptions and nonsense that may be getting

posted to that group.

I wish I could say the Facebook group has the knowledge, quality, and

class of this Group. Of course it has taken us more than a decade

to get where we are now, with a nice balance of opinions thanks to

active, well-informed members who are glad to counterbalance an

occasional questionable post. I am frankly having trouble reading the FB

posts at all. That is one reason I do not monitor the site nearly as

closely as I probably " should. " (Another reason is that Facebook is

still making me go through an elaborate signup each time I try to go

there, filling in the " name " of my computer, etc.)

I guess I am sending out a kind of appeal to the rational and articulate

members of this group who may not have participated much at the Facebook

site. Can I enlist any of you outstanding and knowledgeable Feisty

members to help us to monitor that group a little better? I'm afraid the

only way we can really manage or moderate the group is for more of us to

look over the comments and jump into the discussion when we read

something truly off the wall. There is no way to impose any rules or

recommendations on the group, and it seems like kind of a free-for-all

--whoever posts the most comments automatically dominates the

discussion. I have to admit I am pretty irritated at the seeming

overload of ignorance I am seeing over there. (Or maybe I just chose to

make my last " visit " on an unusually bad day for common sense and

reliable medical facts?)

Any input on this situation? Does anyone think the Facebook Feisty

group might have been a mistake? Do most people prefer posting at the

Group? I guess it's obvious that I'm still kind of at a loss about

this whole social media thing. Help, help!!

Thanks,