What Happened w/Your Scoliosis During/After Pregnancy? (New Member :)

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Hi Everyone, I am glad to have found this forum. First of all, PLEASE pardon my

ignorance regarding scoliosis. I have only just begun my journey to really

understand the condition, and the doctors I've met along the way haven't been

all that helpful....

I'm 37 years old, married to a kind husband and the mother of two wonderful

children, a 3 year-old girl and a 1 year-old boy.

I have a constellation of skeletal deformities: moderate congenital pectus

excavatum, flat back syndrome, and S-curve scoliosis first diagnosed as a

teenager. (Also idiopathic thrombocytepenia purpura -- don't know if the

platelet disorder is related, but it's weird enough that thought I'd throw it

in.)

As a teenager, there was talk of fitting me for a brace. My scoliosis was mild

(I forget the numbers...I want to say 11/14 or something along those

lines...please forgive my stupid ignorance as I am probably blocking it out, I

was so scared and in denial). Because I was a small-framed, shy teen already

prey to bullies and teasing, I fought the idea of a brace that was going to be

worn 23 hours a day (I had read...what was it?...Deenie?). I was told to relax

and just " wait and see " if the curve progressed. At age 21, it had stabilized

with roughly no progression from the original mild numbers. All but one

orthopedic specialist told me not to worry -- my spine would remain with that

mild S-curve, with no degeneration in my future. The one solitary doctor who

was concerned that it would progress inexorably over time -- well, as a young

person, I chose to ignore her, because who wants to hear bad news? I already

had enough going on, trying to accept myself for looking a little different than

everyone else, wanting badly just to be " normal. " (By the way, I had lopsided

breasts and had two surgeries to correct that. I was trying really hard to fit

in with the " norm " .)

When I was pregnant with my first child, my pregnancy was labeled high risk due

to all the skeletal stuff -- they were mainly worried that the pectus and flat

back might cause undue crowding of my heart, which is already somewhat enlarged.

But it actually went smoothly, except for delivering my daughter slightly

prematurely -- one month early. But she was healthy and I felt fine afterwards,

and life went on. (By the way, she was born with mild pectus and what looks --

to me -- as flat back, but the back thing hasn't been confirmed with an X-ray.)

I honestly did not think about my back and spine ONE TIME during the first

pregnancy. My back had been relatively pain-free throughout my young adult

life. As far as I was concerned, there had been no change from the slight curve

of my teen years. I had no reason to think otherwise.

Fast forward to my next pregnancy, at age 36. It started out okay, but by the

2nd trimester I was hospitalized multiple times with preterm labor. They were

able to control this issue ultimately with medicine, but I really felt like my

body was trying to get free of the weight within it, as much as I

intellectually/emotionally wanted to protect that same baby.

Around month seven into the pregnancy, my back went haywire! I had taken a long

car trip to see my mother, and by the time I arrived at her house I was going

crazy from pain, all of it radiating from a spot in my lower back and hip area

on the left. I couldn't really take anything for the pain, just suffer through.

When I got back home, I visited my gen practitioner as well as my ob-gyn

numerous times, begging for relief from the pain. Well, many women have low

back pain in pregnancy, right? We're told to do hot/cold compresses, exercise,

massage, yoga...and I was sent for 3 chiropractic treatments, something I'd

never had before, and something I would NOT recommend to anyone a) pregnant or

suffering from skeletal deformities. I was told to try Tylenol. No relief.

Finally, at urgent care, I was given a prescription for Vicodin and a muscle

relaxant that was supposed to be safe during pregnancy. Finally, SOME numbing

of the pain. It actually seemed to stop the pain cycle long enough that I could

get off the drugs quickly and just wait for the pregnancy to be over.

But something weird -- I had this new HUMP on the lower right side of my spinal

canal. My husband pointed it out. I could see it somewhat in the mirror, but

with a stomach that big it was hard for me to truly visualize. I showed my

doctor and he said it was a tensed muscle, that's all...

Wrong. I delivered my healthy, happy, skeletal deformity-free son near term

(just a week shy of his due date). Over time, my pregnancy weight came off. I

now weigh less than I did before either children, am quite slender, and I can

now perfectly see that some serious changes have happened. The hump sticking

out of my back? It's not muscle so much as my entire spine seems to have

shifted. It makes me feel ashamed to look at it.

I recently went back to an orthopedic surgeon, and my numbers are now in the

high 20s/30s (I don't have it right in front of me) with significant rotation of

one hip. I'm in pain off and on. I saw the very obvious S-curve in the new

X-ray, and I couldn't even recognize it as my back. My old X-rays are so old,

I've had no luck sourcing them, but I can tell you -- my back NEVER looked

remotely like that in the past. I have NEVER had back pain like I do now. And

the surgeon said... " Oh, it's a nice, balanced curve -- this doesn't concern me

-- not until it gets into the 40s, then we'll look at surgery. " How long does

this take? I'm not having more children...will that slow the progression? He

couldn't really answer me, said something about " Usually 1 to 2 degrees a year. "

Then I sit there and start doing the math and freaking out...that puts me into

my late 40s, still young in my book.

So...what? Are we supposed to just wait and watch ourselves slowly deform over

time, our humps getting bigger, and then drag ourselves in when the curve is

that much worse and then go through major surgery? Also, I hate to sound vain,

but I've always taken great care with my appearance, and now I'm afraid I can't

go out wearing slim-fitting shirts or bathing suits. I also don't want to sound

like a whine-bag, as I'm sure in the scheme of things my curves are laughably

mild to some of you guys. And I don't want to take away from the pain of your

experiences. I just know that -- somehow -- my scoliosis went from extremely

mild to significant enough to be visible to the untrained eye. Pregnancy?

Carrying two babies around constantly on my hip? Does anyone else have a story

like mine, or advice? Do we really wait until our backs are very deformed

before trying to fix them? Wouldn't surgery on a milder curve be a simpler

process, or are doctors just trying to protect us from the risk-benefit problem

of that surgery?

At the end of the day, trying to sit up straight in my office on my office

chair, I find I am completely exhausted from the effort of TRYING to sit up

straight. I can't physically do sit straight anymore. I'm in pain most

evenings. I have to carry a baby on my hip, and then I worry that that is

deforming me more. I'm worried about what else I won't be able to do...soon. I

had so many dreams and plans for the future, and my kids are so little...I

wanted to be an active, healthy mom for them. I guess I'm just seeking a kind

ear and some guidance. Sorry to be so long-winded. I've avoided writing or

thinking about being " deformed " all my life.

Thanks,

Jen