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Living with Scoliosis - My Story

Scoliosis \Sco`li*o"sis\, n. [NL., fr. Gr. skolio`s crooked.] (Med.) A lateral curvature of the spine.

scoliosis n : an abnormal lateral curve to the vertebral column

Thorasic ScoliosisLumbar Scoliosis

Okay, Here we go...

I was diagnosed with scoliosis in a screening everyone gets in the 7th grade.
My parents were getting ready to get a divorce, so my medical needs were put off until the Orthopedic Surgeon told them that my curve was at about 45 degrees and was growing rapidly. Which meant it wouldn't be long until my ribs could puncture my lungs and if that didn't happen I would still be badly disfigured.

So I finally had surgery in 1981. They fused a 12 inch rod, called a Harrington Rod to my spine. They took a bone out of my hip to fuse the rod to my spine.
I remember the day of the surgery because it was the day Ronald Regan took office and the hostages were freed. I was remember going in and out, seeing the TV and all the news coverage. Leave it to me to sleep through one of the most historical events in history! LOL

While in the hospital recovering the first night after the surgery, I was given an overdose of morphine and almost died.
Luckily my Mom was in the room and noticed I wasn't really breathing and my fingernails were turning purple. I woke up with an oxygen mask on my face and all these people yelling, "Roberta! Roberta!" Being totally disoriented, I fist tried to talk with the mask on my face, that didn't work, so I pull it back from my face and said, "My name is Bobbie, Damn it!!" Then I foolishly let go of the mask and it SMACKED back on to my face!
I did this same stupid trick at least one more time before I lost consciousness again!

I wore a body cast from under my arms down to my hips from January until August, with just a little tiny cloth in between me and all that plaster.
It was really gross and really uncomfortable. Taking sponge baths for 8 months is really not my idea of a good time. I went from wearing a size 5 jeans to a size 13 jeans so they would fit over my cast. I only had 2 pairs of jeans too. So the knees were really wearing out by the end of that 8 months. And yes I was really given a hard time about that with the jokes! LOL Not to mention all the "Turtle" jokes. But hey, some days I did feel like a turtle! LOL
I dropped out of school to be tutored at home because I couldn't bare being 14 and looking so weird in front of all my friends. The strange thing about it though was, by the time I got my cast off, most people didn't even realize I had a body cast. Some people thought I just got fat, then got skinny again really fast.
(I didn't have the brightest friends, okay!)
The worse part of getting the cast off was all the dead skin my Mom had to literally scour off of me. Now that was a pleasant experience! (sarcasm intended).

Well once my cast was off, the only thing I was left with were 2 really ugly scars. One on my hip where they took the bone out and a really ugly 13 inch scar down my back.
Needless to say I could never wear low back shirts without someone knowing I had back surgery. And if they saw the scar they always had to touch it!
It was bad enough that I was left with this numbness in my hip and back. But I certainly didn't need people touching it and reminding me!

Fast forward a few years...

Okay, so I survived my teenage years. So we are going to fast forward to around the end of 1987 to early 1988.

I started having pains in my back again. I was this really sharp pain under my left shoulder blade along with some really terrible headaches.

I went to Doctor after Doctor; Test after test. Year after year. No relief from the pain yet....

I finally went to an different Orthopedic Surgeon who suggested I try physical therapy. After 6 weeks of PT I still had no relief from the pain. So the Doctor decided it was time to do surgery again. Oh Yay! Just what I wanted. (More sarcasm)

The only "excuse" they could come up with for the pain I was having, was that I was allergic to the metal in the Harrington Rod and my body was rejecting it. I personally thought it was the lamest excuse I ever heard, but what choice did I have? So my only option was to let them slice me open again.

With the A.I.D.S. crisis just appearing in during the '80's in our society, and the blood banks not being 100% on their screening of the blood, I decided it was a good idea if I donated my own blood for my surgery. Considering (and yes I know it was a small chance) that I dodged a bullet on my first surgery. But I really didn't want to take any chances. If that remark sounds derogatory it was not intended to be.

So I was told I had to donate at least 7 pints of blood. And this wasn't something I could do on a weekly basis. If my cell count was low, they wouldn't draw blood that week. So this whole process to well over 2 months to complete.

Then Murphy's Law struck. "If anything can go wrong, it will..." On my very last visit to the blood bank while donating my last pint of blood, I was greeted with the news...

To understand this completely I must first give you a description of my Orthopedic Surgeon. He was a man probably in his 40's. Maybe 5' 8" and about 285 lbs. (I'm not good at guessing age, height, weight, etc. I guess it's a good thing I never joined the carnival circuit, huh!)
So lets just say this man was extremely over-weight, okay? Well anyway, they tell me this IDIOT Doctor was riding his son's moped and wrecked it! I guess it messed him up pretty bad; screwed up both his knees, etc. He would not be practising medicine for at least another 3 months!
All this just about 1 or 2 weeks before my surgery! I burst out in tears right there in the blood bank. I know the people around me thought I got some "other" devastating news. But I really didn't care. I was just about at the end of my rope. I had finally psyched myself up for this surgery and they were telling me that now it would possibly be another 3 months or more before I could have it now!
Then they asked would you like to wait or see one of his associates? Well Duh!! Send me to the associate!!

So finally in October of 1989 I had my second back surgery. They removed the Harrington Rod from my back. (They even let me keep the rod! LOL Well, why not? I paid for it right?)
And they even fixed my scar so that it was hardly noticeable. I seemed to recover from this surgery much faster too. I think that was because my body had already been through the trauma in that area before. (?)

Then after a healing period it was back to Physical Therapy again for another 6 weeks. :-(
If you've never been through PT before, well lets just say it's worse then..... I'm not sure what it's worse then, but it certainly isn't a lot of fun! Even after the surgery, and 12 weeks of PT (6 weeks prior to surgery, 6 weeks post surgery), I still had the pain in my shoulder blade!
As years continued to go by the pain lessened. And now it only flares up from time to time.

So where are we at today?

Well in 1997 I was blessed with a son. TJ. Then 3 days after his first birthday, I got pregnant again with my daughter Andie.

Well all my life it was questionable whether I would be able to carry children, with my back problems.
I only had a few problems during each pregnancy though. But then the real trouble started when my daughter was only 1 month old.
I messed up my back again.
I didn't think it was anything serious, until they sent me to have x-rays.

Well, first they scared the $#!* out of me by telling me they detected Spina Bifida in the xrays. So they sent me to see an Orthopedic Surgeon, who sent me to have an MRI done.
For anyone who has never had and MRI, well when they ask you the question "Are you claustrophobic?", they should really be asking, "How would you like to be buried alive for an hour, while we make some un-Godly noise to really freak you out?"!!
I didn't even last 10 minutes in my first MRI before I was crawling out, because they could get me out fast enough for my taste! And do you know they had the nerve to charge over $250 for that lovely experience?!
So I went and had an open-sided MRI, which is more like laying under a truck bed. But I was on the table for over 2 1/2 hours, so by the time they were done, my back was really killing me.

The result? Well so far the only thing they can tell me is that all this pain is from the pressure the scoliosis is putting on my spine and the I now have arthritis in my spine.
Well this diagnosis is a little hard for a 33 year old mother of an infant and toddler to swallow. So I plan on seeking a 2nd opinion in the year 2000.
Because the only alternative they have given me to to take anti-inflammatory arthritis meds and pain pills the rest of my life.

So stay tuned....
I'll write more to this exciting saga when time permits...... LOL


Post Script

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Just my story.....

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