's Story

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My story

My scoliosis was discovered by my mom when I was in the 7th grade. I

had brought home my sewing project from Home Ec, a skirt. I tried it

on to show her, she started yanking at it saying it didn't hang

right, and then came the gasp. She had me bend and turn every

direction checking my back out. When I was taken to the dr. soon

after, he did say scoliosis and sent us on our way with orders for

me to use my left hand more to strengthen the muscles!

Nothing more was done for me, and as I grew older, I knew it was

more pronounced by the way my clothes fit. I was pretty good at

hiding it, and it really didn't bother me a lot, just a few days

when my back felt heavy, a bit achy.

Few more years passed, married, had a son. In the few years, I

really noticed how bad my `hump' (yes that's what I called it) was

getting and decided to see an ortho doc. Can't remember his name,

but he was very kind. Told me my spine was in an s curve and if I

let it go my heart and lungs would be compromised. He had me wear a

brace to try to keep if from getting worse. Just a little jobber,

hips to top of boobs, very comfy. When I came back in for a recheck

some 6 months later, the degrees had progressed and he told me I

needed surgery, suggested Rancho Los Amigos Hosp. This was

Sept. '77, I was 25.

I got right in when they saw my top curve was over 85 degrees and

the lower 48 degrees. The 85 number really scared me, kept thinking

OMG I am almost a right angle!

Surgery went well, fused from T5 to L5. Was placed in Stryker frame

for a short length of time. When they got me braced and out of bed,

I was immediately tilted forward. They kept telling me to straighten

up and don't throw your legs out when you walk. Couldn't help it! PT

didn't help either. One thing that sticks in my mind though, when I

was in PT they told me I couldn't go home until I was able to get

myself off of the floor with no help. I did it first try to (my son

was with my ex and I just wanted to get home to get him home!), but

when I think back now…I am surprised that they had me do that…and

what I could have done to that fusion!

Because of the tilt I knew something wasn't right and got myself

referred to an ortho in Orange Co., who agreed it wasn't right and

said she could help me. Surgery was scheduled for fall of '81.

Insurance co. had other ideas, cancelled their contract with that

doc and sent me to UCLA Medical center, where I was quickly

told " there is nothing wrong with your fusion, why are you here

wasting my time? " . Their exact words. I felt so stupid.

This is getting long, sorry. Will try to shorten it…

Years went by, and my neck really started bothering me and I am

tilting more and more, now my lower back started bothering me and oh

my gravity sure can pull on ya can't it. So got my self referred to

a neurosurgeon, Dr. Taggert, in 2003. He did a ct, x-rays, say there

was some degeneration of a few discs. Just said, yes it needs to be

fixed, I could remove the rod, maybe put some wedges in. I tried to

ask a few questions, got no where. Went home, thought about what he

said, or what little he said, called him the next day, told him I

wasn't thrilled with the way he spoke to me, or the surgery he

suggested. He asked don't you want the surgery, I said no. He said

ok, I can't do anything to help you that was that. He did send me

to pt to see if they could get my back strengthened up, because

according to him, it doesn't matter if your back has the Harrington

rod in it, it shouldn't cause you to lean forward, your muscles are

week. (anybody rolling their eyes yet?) So I go to pt.. the guy was

going over exercises, and he tells me to lie down and arch my back.

HUH? His info somehow came across that I wasn't fused so far

down. When I showed him my back, he hands me the list of exercises

and says `Just do what you can'. I left and didn't go back.

In the past few years it has been harder and harder to walk any

distance at all. My dear darling husband came home from work one

day, saying he saw the thing that would be perfect for me. I have

mentioned this before. It's a 3 wheeled walker. My ticket to

freedom. Its compact, has a little case (for oxygen tanks which

thank god I don't need), but I use it for my purse and any smaller

bags. I can lean and walk some pretty good distances again. I

usually pay for it the next day with the lower back pain but boy is

it worth it to be able to get out. I was prescribed Mobic by my

pcp, and my neck rarely bothers me any more. It did help the lower

back for awhile, but these days, well, I feel like I have been

kicked in the tailbone.

Now, thanks to my cheerleader , I am trying to get to see Dr.

Hu. My pcp has referred me to a Pain Clinic and my first appt. is

the 17. The 18th I see Dr. Taggert, again (big sigh), and will see

if he will put in a referral to Dr. Hu.

Hopefully by the end of the year, I will have a date to put on the

calendar.

Tremberth