Mina: The Truth

[Guest guest]

Hi, Folks --

I had originally submitted the following post to another group, in

response to a statement describing Mina as " just a

flatback patient " and further discrediting her. I feel it is

important to set the record straight. See below.

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Actually, Mina is far more than " just " a flatback patient.

She is a skilled medical writer and seasoned newspaper journalist,

as well as an assiduous researcher with a Master's in Library

Science. She had strong opinions at times, and one or two of her

earlier statements may have been incomplete or inadvertently

inaccurate, but to this day, you can rely on much of her excellent,

informative descriptions and explanations for reliable information

about flatback syndrome.

was also a pioneer in terms of getting the word out on the

Internet. Untold numbers of people with flatback would never have

gotten to the right kind of surgeon or received the correct kind of

surgery had they not found 's now-famous postings on the

Web. I myself, like so many others, was about to sign on the dotted

line for a spinal revision by the unqualified surgeon who had

originally installed my Harrington rod -- despite my own 20-plus

years as a medical writer and editor with publications such as JAMA

Medical News, which had a readership of some 200.000 physicians

during my years there.

opened my eyes with respect to the reality of flatback

syndrome. She was always glad to correspond by personal email or

talk on the phone if she could save someone else from some of the

horror she herself went through. At the time I knew her, circa 1999

or 2000, I believe she had undergone something like seven revision

procedures -- the latter procedures aimed at undoing some of the

damage from the earier ones.

If sometimes seemed a bit adamant or emphatic or overly

feisty, she probably had good reason. Too often she was shunned or

censored by some segments of the early online scoliosis community,

which did not always want to acknowledge the reality of widespread

damage induced by the Harrington rod. In fact, there has long been a

kind of schism in the online community between two assertive groups:

those who are primarily patient advocates like , and those

who are much more surgeon-identified or who see themselves as

primarily upholding the positions and interests of the Scoliosis

Research Society. These two groups need not be in conflict, and it

is truly unfortunate that at times they have been.

Admittedly flatback has traditionally been rather hush-hush, as

well, among the generally younger revision surgeons, out of

deference to the old guard whose Harrington rod cases they were

inheriting and were being asked to correct, revise, or salvage. (The

earliest term for revision surgery was " salvage surgery. " )

At the same time, however, many physicians and surgeons were getting

their eyes opened when patients brought in printouts of

Mina's writings on flatback syndrome. Her own research was generaly

fairly reliable not only because of her thoroughness and careful

fact-checking, arising from her professional training and

experience, but also because she voluntarily subjected her material

to expert MD-review before posting it on the Internet. No one knows

how many confused, hurting, frightened, even desperate individuals --

searching for any information that might shed light on their

progressive, devastating flatback deformities --have found their way

to hope and help because of the brave and groundbreaking efforts of

Mina.

Best,