ABOUT REVISION SURGERY -- VERY IMPORTANT!

[Guest guest]

Dear Feisty Friends,

First, a warm welcome to our new members (Diane, , and anyone else

I may have missed). And congratulations to Carol -- you are a stellar

success story, Carol, and I am thrilled to hear that you have had such

great results from your revision surgery.

I want to address a few issues that people have brought up in recent

posts:

(1) No one can tell you when or if you should have revision surgery. I

know this is a huge decision, and I wish it could be a less lonely one.

Only you inhabit your body, though, and only you know just how much you

can take. I avoided the surgery for four years (partly because of

insurance problems). I finally had it only when I reached the end of my

patience and tolerance for my flatback deformity. I was barely

functioning, in excruciating pain most of the time, carrying my torso at

a 90-degree angle to the ground, unable to sleep in a bed or walk

anywhere without leaning on a walker. My quality of life was near zero.

At that point I realized that there was just no alternative -- the

surgery, as drastic as it was, was my only hope of having a decent life.

It helped me a great deal, but I went into it (like many other Feisty

members) feeling scared out of my wits.

(2) As Kathy pointed out, you can not assume that any scoliosis surgeon

is qualified to perform revision surgery for flatback syndrome. The

Scoliosis Research Society (SRS) is NOT a good guide to flatback

revision surgeons! Some proportion of the membership is skilled and

expert in revision surgery, but many other scoliosis surgeons are not at

all qualified to correct flatback syndrome. Some of our members

(including me) have had to contend with scoliosis surgeons who were

anxious to learn how to do this kind of surgery by using us as their

guinea pigs. In addition, an unknown number of qualified revision

surgeons do not belong to the SRS. I would guess this might include some

neurosurgeons, since neurosurgeons were only recently admitted to SRS

membership. Unfortunately we have no comprehensive listing of revision

surgeons you can trust, but the ongoing experiences reported by members

of this group is one guide to who is good and who stinks.

(3) Why would any spinal surgeon today set out to correct your scoliosis

but end up giving you flatback syndrome? I wish I knew. I learned from a

distinguished revision surgeon just a couple years ago that this is

continuing to happen. Surgeons are still operating on people without

regard to the sagittal plane, and are performing procedures that are

just about guaranteed in advance to cause flatback syndrome. At first we

thought this happened only with Harrington rod surgery. Then we began to

hear about flatback after surgery with newer instrumentation, notably

Luque rods. We now know that no instrumentation -- even the newer Isola

rods -- is necessarily safe. Everything depends on the surgeon. Unless

you are sure your revision surgeon has the requisite experience and

expertise, you are better off avoiding flatback revision surgery. In the

wrong hands, it can be far worse for you than having no surgery at all.

Best,