Questions for

February 10, 2004

...

I probably would have surgery, but would want to know in advance

exactly why, and how the new surgery was going to correct the

situation. Having iliac screws out seems to be almost standard

surgery these days, so that doesn't concern me. But, if you're having

curve progression, or reduction of your lumbar lordosis, there has to

be a specific reason. How certain are you that having your hardware

replaced will resolve your problems? I don't have anything against

Dr. Ondra per se, but I would definitely want confirmation from

another surgeon before blindly agreeing to any additional surgery. If

I were in your shoes I'd want to feel fairly certain that I'd be

significantly better off after surgery.

In response to the other topic, I am a moderator on the National

Scoliosis Foundation's forums at:

http://www.scoliosis.org/forum/index.php

I encourage everyone to check it out.

If you want to see what I consider the best scoliosis links, you can

find them on my website at:

http://www.scoliosislinks.com

I'm working on adding an Outcomes page now.

Regards,

February 11, 2004

Many thanks for the info. . I will look forward to exploring your forum and

getting updated on your links.

My concerns about surgery are about the same as yours. I am interested to learn

that having bolts removed is becoming routine, though.

I do not know what to do. I am going down to Northwestern for new spine films

and a so-called stealth CT today and am hoping to contact Dr. Rand in Boston to

learn what he thinks. Perhaps he will want me to FedEx an x-ray.

After all these years of writing about scoliosis and flatback, after undergoing

two fusions and a staged flatback revision (anterior/posterior, 16 hours total,

1-plus year recovery time -- now fused approximately from T3 to S-1), after

discussions and debates and endless analysis of my whole long-term situation . .

.. .I am stumped. I am getting that " back to square one " feeling. This is my

body, this is my life, and no one on earth can tell me what to do . . . yet I

can not decide. I can not intuit or rationally derive or otherwise eke out some

livable resolution.

I am having pain (not continuously, thank goodness) as intense and destructive

as 9-plus on a 10-point scale. I remain disabled and limited a good deal of the

time. I believe my flatback may be progressing for reasons unknown to me. I do

not know whether another big reconstructive wingding, operation #5 or so, will

do me any good whatsoever. I do not know if there is any alternative to trying

this kind of surgery.

I can not get relief from any oral narcotic without an unacceptable increase in

narcoleptic attacks which disrupt my life. I doubt that I can get a morphine

pump either, at least in the Chicago area. (Before my last revision, I had great

pain relief for 24 hours from a dose of intrathecal morphine, with no drowsiness

thanks to the route of administration. I got referred on to a neurosurgeon for

a pump, only to be treated like some kind of shady character who was malingering

or drug seeking in view of my " nonmalignant " pain.)

I feel that some of my doctors -- my regular doctor -- have/has pretty much

given up on me. I do not feel the atmosphere in the medical community is very

hopeful or can-do or upbeat in any area of concern or activity these days.

Bitterness and hopelessness have run rampant in today's managed care

environment, and all of the existing discouragement is only compounded by

current political priorities having to do with the misguided " war on drugs. "

Should I try to find a pain program, someone to keep me injected with lidocaine

at the worst spots? Should I try to find some kind of body work or palliative

massage? How will I physically get myself to any of these types of

interventions, given my degree of physical pain and lowered mobility?

This is a very hard time for me. I apologize to everyone for letting my morale

drop so low.

I have scheduled a posterior revision (pedicle subtraction osteotomy, etc.) for

Feb. 24, but I am really not at all sure this is the " right " thing to do.

I am not very confident that there is any " right " thing to do.

I wish I knew what to do.

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