here's my story

[Guest guest]

I wrote this earlier..

Warning- I am feeling a bit emotional today and

I have never written all this down before. This is long!

I'm off to bed. It is late here and I need to work in the morning.

I started on the flat back journey much earlier than most of you and

I have taken what appears to be kind of unique route. Here's my

story:

I was fused from T7 to L4 with Harrington Rod instrumentation at T10

to L4 in December of 1976. Hugo Keim performed the surgery in NYC.

It was truly awful. Most of you know how awful. Most of you know the

torture of being stretched on a rack (what they referred to as making

the spine more limber); most remember the pain, the black and blue

thighs from the injections, the smell and claustrophobic feeling of

plaster; and many, like me, may also remember the trauma of being

photographed naked at 16. Many of you like me, never discussed how

awful it was. We just went on....but truthfully, for me it was life

altering in ways I have only really begone to realize..

Recently, I had to discretely excuse myself to the bathroom to cry

after another mother asked me to take a look at her daughter's back.

At 12, she has a significant curve and hump and I experienced what I

guess could be described as a flashback. It just made me SO SAD to

see this beautiful little girl...crooked and just so fragile looking.

At the same time, I was (I am) so thankful that my own daughter is

growing nice and straight.

It is my belief, that it is that early (childhood) shared experience

that binds many of us so closely together here.

My subsequent three surgeries, though not a walk in the park, were

not traumatic experiences. For those " new " to flat back, there are

two important things I hope you get from this group if nothing more.

First, spinal surgery and post-operative care has come a LONG way

from that of the 70's and 80's. Secondly, find someone with a lot of

experience to perform your surgery.

Anyway...flat back. In my case it was early, if not immediate onset.

Just this evening, I found a report from the Lahey Clinic which I

hadn't read in over twenty years. I went there in May of 1982 (about

5 years after my original Harrington Rod surgery) because I was

having pain in my neck and down my left arm. I laughed to myself as I

read this: " I would like to stress the importance of maintaining good

posture and avoiding a flexed position of the neck. In other words

you should sleep with just one pillow and you should stand upright

with your head held upright and not flexed because that would

contribute to muscular strain of the neck. " To me it is now clear

that I was already trying to adjust to the loss of lordosis, but it

went unrecognized as such.

In 1988, I was working as a graphic designer and sat leaning over a

drawing table most of the day. This did not help. By 5 pm I could not

stand up. I began to self-medicate with alcohol. I am sure that only

exasperated the situation. I didn't want to think about more spinal

surgery. However, eventually I couldn't avoid it and then the

appointments started.... I was told my leg lengths were uneven

(they're not); told to keep my weight down (I was 105 pounds at

most); told that I had a herniated disk (NOT) and told " I can do the

surgery " (even after I mis-diagnosed you and never did it before). It

was not a fun time. I cleaned up my act and I found the wonderful

folks at the National Scoliosis Foundation who referred me to a

support chapter of the Scoliosis Foundation where I was advised to

make an appointment with Rand. He immediately diagnosed flat

back.

I fought with my HMO for a while and finally got the referral for Dr.

Rand to do a - type Osteotomy. (September 1990). He

saved me. It wasn't much more than three months later that I felt

better than ever. However, at the time of this surgery, I was told by

Dr. Rand that I would probably be back in about 10 years to extend my

fusion.

Side note: In August of 1993, I had my daughter. During pregnancy, I

felt terrific. I needed a c-section due to a fibroid but I was able

to stay awake. The anesthesiologists were able to give me a spinal.

They went below the fusion and then tilted the table so I was pretty

much standing on my head this did the trick. It would have been

easier if I had provided x-rays.

Anyway, the 10 years Rand gave me turned out to be closer to 14. In

June of 2004, I had a same day A/P fusion of L5/S1. I went in on a

Tuesday and home on Saturday back to work about 6 weeks later.

Unfortunately, my pain increased and I needed another surgery, which

I had in April 2005.

I like to think of it as my 10 month, rather than 10 day, staged

revision. We had initially discussed extending my original fusion to

the sacrum which would have required a 2 day staged revision and he

would have used iliac bolts. Both of these things scared me. L4/L5

was still healthy (confirmed by a discogram). So, I took the chance

that the fusion of L5/S1 would due the trick.

It didn't. When standing, I just never could find a position that was

comfortable. I started learning forward again. Unlike flat back, I

COULD straighten up, it was just more comfortable to lean forward.

The pain I was told was coming from the facet joints but I think it

was really more of a mechanical issue.

I have posted two x-rays in the photos section. You can see the rods

from the 1990 osteotomy surgery and then the good disk and then the 4

pedicle screws and cage of the lower fusion. This last surgery in

April was to connect the whole mess together. As I understand it,

because I had already fused at the lower level, he could then attach

to it and I didn't need the iliac bolts. He also could do the whole

thing from the posterior approach only.

Unfortunately, there were complications. I had a dural tear. I have

read that this is pretty common and hard to avoid in repeat

surgeries. The only consequence is that they kept me flat for a bit

longer. I never got a headache or anything. My other problem was

blood loss. My fluid levels were so out of whack that my blood

pressure was as the ICU nurse put it " in the toilet " . At one point, I

don't think they could even get a reading. When the duramorph (pain

killer in the surgical site) wore off, I was in agony and they could

not give me anything else. It was a pretty hellish long night but

then I bounced back. I think I set a record. The surgery was on a

Tuesday and I went home Friday afternoon (and I live in a third floor

walk-up). I was back at work 5 weeks later part time.

I am managing fairly well on 10 mg. Oxicotin twice a day. My posture

is good and comfortable. It feels " right " . I still have residual pain

on the left side-lower back, butt and leg. Like Dianne S., my legs

fall asleep all the time. I am hoping the pain will ease up. I am,

once again, on the go fairly constantly and I am okay. It would be

nice to live without narcotics, but I am told that what I am taking

is not much and I just may need to take something forever. I am

making peace with that thought but reading here, I think if that is

going to be the case, that I should consult a pain management doctor.

So that's it. It's been very cathartic writing all this and thank you

to those who actually may have read it all. . Life is pretty good

right now.

Ann