Re: Contemplating Surgery for my Scoliosis

January 24, 2008

My nephew's rods broke. He had the whole spine done, I think just posterior, and

2 years later his curve was back and he found out the rods were broken and he

hadn't fused on several levels. He had revision, and now 6 or so years later

he's all good. So I guess it's all about whether or not the fusion takes.

I'm really nervous now with this deal about having hepatitis c. My dr said

having surgery is not a problem and to have an ultrasound of my liver when I'm

in the hospital. But jeez, it's bad enough having to deal with scoliosis, but

now this. And I have no way of knowing how I got it.

Re: Contemplating Surgery for my Scoliosis

Also, Daws,

A couple years after my surgery the doctor was

discussing surgery to remove the rod. We'd never heard

of such and were not told in the beginning that

removal was ever an option. So, the next appointment a

few months later my father gets off work. He only

missed work the days of my surgeries (2 open-heart &

one back), so him getting off work was a major

important occasion. Well, we go to the hospital 80

minutes away & the doctor said something like 'the

bone has grown around the rod; it can't be removed

now.' I don't know if that's actually what he said; I

don't remember it verbatim. He said it in a manner

that was almost insulting. My mother & I had both

heard the same thing during the previous doctor visit.

Now here he was saying that he was not, no never gonna

remove it. He never brought it up again. I saw him

annually for another 10 years. Then one year I called

& made an appointment to see him. Got off work myself

because I was now grown & in my mid-to-late

20s...drove all the way to the hospital only to be

told that he'd retired/quit- I can't remember which. I

was po'd that I'd taken all day off work & wasted

nearly 3 hours in traffic going to & from and no-one

had bothered to call me & tell me my appt was

cancelled. As I talked with the office staff I asked

if there was another doctor seeing his patients since

I had an appointment, and they simply said 'no.' This

is a major medical facility in our state. A hospital

where ppl are usually life-flighted or transported

when local hospitals can't help. A university

hospital. For them not to have an orthopedist on staff

& not to call & inform me of the cancellation/ change

whatever it happened to be...was rude, improper, and

so many other things.

I don't know anyone personally who has had their rod

removed. I don't know anyone whose rod has broken. All

the girls I know have harrington rods. We're all in

our late 30s early 40s now. They all got better

corrections than I did because their curves were not

as large. Also, the other girls had their surgeries

done around ages 14-16 and mine was done at age 11.

They wore the milwaukee brace fewer number of years

due to being diagnosed in their teens whereas I was

diagnosed at age 7. ~Moonbeam

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January 28, 2008

I'm 57 as well !! I haven't heard any stats on curves. I've said before that I

am ashamedly passive about my care at times. I look for the best person and turn

myself over to him/her. I think it has to do with stress maintenance. My way of

dealing with things. I heard one dr call my curve a teacup handle. I had a lot

of rotation, a whole lot. first had problems because of discs " falling " out of

place at the bottom of the curve, just as it was about to go into the straight

base, if that makes any sense. I only had one measurement given me- a 65 degree

curve before surgery.

If it is true that some of us have a curve because of polio, it makes sense that

the curve would worsen with age because of general atrophy of muscles with age.

The thing is, when I was first pushed to see a surgeon by a chiropractor, it was

a general ortho surgeon. He specialized in spine stuff, but not scoliosis. He

did, however, attempt a few scoliosis surgeries a year. He told me I would be

out of work for a year, possibly in a body cast and that he couldn't improve the

curve, only stop the progression. I was 43 years old at that time. I went home

and started exercising. I went at it with a real determination. So much so that

I just knew that not only would my curve not be worse, I just knew it would

actually be better. I had a big " gym " in the bedroom, with the different

stations with the pulleys and weights. We didn't have room for it- we climbed

around it for months and months. I had an appt one year later, went to the same

office, signed in, only to be told that the

dr had opened a new practice across town, with a few other spine drs. I had not

been notified.

I was so frustrated that I had taken off work, driven the hour each way, yada

yada, I just let it go. But I did keep exercising. The next fall we had met our

family deductible so I wanted to get in all the appts I could think of. So, back

to the ortho dr. I was 8 degrees worse. It was a complete shock to me. The dr

acted mad- said " when you finally decide to have surgery we can stop the

progression. But you need to not wait too long " . Ending up in a wheelchair was

mentioned. That was when I decided to find a scolio specialist and ended up in

NYC and a whole different outlook. Improved curve, 6 months out of work, plastic

brace, etc.

I don't know why I went into all that ! :0) It would be interesting to have more

info on the polio. And like you, I am glad I didn't have surgery in my teens.

However, the fact that I was 45 when I did have mine makes me think my older

bones haven't fared too well, for the age reason. I do keep putting off surgery

now in the hopes that the Big Fix will be developed sooner than later. Some

amazing, simple procedure that holds the spine in place without problems. No

doesn't that sound wonderful??

Bea

debbie brickley <debbiebrickley@...> wrote:

Bea: I remember that was what they told me, my mother and grandmother when my

scoli was diagnosed at 12-13, i.e.: possible polio on the left. I am 57; how old

are you? I'm seeing more and more how lucky I am that we resisted the whole

Harrington rod surgery at that age. Probably about 1964. Scoli surgery then was

archaic. But I have the S curve. I would think that a C curve is somewhat rare?

I thought most scolis had a compensatory curve.

Debbie

Beverlee <bea_simmons@...> wrote:

Yes- my curve just came over to the right side. One theory about the

possible cause, when I was diagnosed at around age 14, was that I might have had

polio that just involved the muscles on the left, allowing the muscles on the

right to pull my spine to the right. Just a theory. I didn't have the

compensatory curve below it that gives it the 'S' shape. I didn't look like I

had scoliosis in my clothes, for the most part. As I got shorter and my ribs on

the left got down on my hip I developed a slight back hump but it was diminished

a lot after surgery. I have no idea how the types of curves compare where

problems are involved. I've never given any thought to it- I guess, since

everyone talks about their degrees of curvature in upper and lower curves that

the " S' curves must outnumber the " C " curves. Anyone out there like me? Bea

Dawson Darling <tweaker_bms@...> wrote: lol punny...

To be serious again, what exactly is a C curve? doe sthat mean the

shape is in a C, not just an S?

> >

> > Daws,

> > Before the surgery I spent 5 years in a brace that

> > reached completely up under my chin & went all the way

> > down to my hips, so yes I had the butt wiping issue

> > prior to the surgery. The only difference was that I

> > could take the brace off for 1 hour a day and for all

> > the exercise I wanted. Butt access was easier when the

> > brace was off, but I still approached from the left

> > side because my rib hump was larger due to the curve

> > being larger. It's not a big issue because I forgot to

> > mention it until I read someone else's post. ~Moonbeam

> >

> __________________________________________________________

> > Never miss a thing. Make your home page.

> > http://www./r/hs

> >

>

January 28, 2008

I wasn't sedated yet, just scared. We had traveled so far, had the long term

stay set up at the hotel. I'm thinking about how complicated it would be to do

it all over again. Had my leave from work, the teen at home situated, good

grief- I knew I didn't want to have to re-schedule. That was the hold they had

over me. I am furious at myself that I didn't push to find out what she was

talking about. She was very testy and not wanting to say any more about it. I

did know my rights, but I was going to have the surgery unless she had said

something like ' we're using fish scales and elmer's glue to hold the fusion'.

I did get the surgery notes, but not the rest of the chart. That's a good idea.

They would probably charge me for all of it and right now I don't have any extra

dough, but when I do I will see what I can find out. Thinking about it now- if

the experimental procedure had been spelled out on the form, I would've read it.

I don't think there was anything helpful even on the blasted sheet I signed!

Good grief- I get madder the more I think about it ! I spent months making calls

and sending registered letters to the hospital and the surgeon because I had

intensive care insurance thru AFLAC, but I had to have a bill that showed I was

in ICU. It was a few thousand dollars !!!!!!! due to me but the hospital bill

was generic and just said 9 days. I was in ICU for 5 days. I was never able to

get that straightened out so I was able to collect on the policy. No telling how

hard this would be to get- a form I signed. Oh well. I lived to tell about it

and feel very lucky and blessed with

the life I have. I'll sign off with good thoughts to sleep on :0) Bea

debbie brickley <debbiebrickley@...> wrote:

And illegal to make you sign something when you were medicated without a chance

to think it through.

Debbie

L Howell <moonbeamblessings@...> wrote:

Bea,

I'm intrigued about what you signed prior to going

into surgery. That's a slimy way to do a

procedure...have you medicated & going into OR &

saying 'sign it or you're not getting operated on.'

Have you requested all the records regarding your

hospital stay? Even though it was some 'experimental

procedure,' since you had to sign it, they have to

have the paperwork since they needed it to begin with.

You can find out what the procedure was with that

paperwork. You'll have to wade thru all the notes, but

knowing medical terminology it should be easy enough.

~Moonbeam

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January 29, 2008

Bea,

Your comment on fish scales & elmer's glue was

priceless! I'm appalled at how many facilities are

charging now for you to have copies of your medical

records. I think a lot of them do this just to

discourage you from getting them. Now a 'decent' price

for a copying fee, I can understand that. But a flat

charge of $20-$50 bucks is ridiculous (which I was

quoted from a neurologist I was seeing).

I hope you can find the answers to your 'mystery

procedure.' ~Moonbeam

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January 29, 2008

To everyone that has followed or remembers my case: I saw my surgeon yesterday

for the first time since surgery, 9/27. It's a teaching hospital, UCSF, so

ofcourse they send in an intern to talk with you and do all the basic exam

first, then my surgeon, Dr. Hu, who is head of the dept. I found out: that with

current measurements my uncorrected thoracic curve is now at 62%. I got to see

my hardware in my lumbar area: titanium screws and hardware joining the 3

levels. And my spine is still very crooked.The intern thought I was doing quite

well. They both thought my left sciatica might still resolve on its own, because

it might just be nerve irritation that takes awhile to get better. I don't think

either one bought into my piriformis problem, on the left side. They just can't

believe that that muscle causes my sciatica. But they encouraged me to continue

working on it with my physical therapist. I showed them the trigger point " knot "

that I have there, and they offered to

inject it with lidocaine, so I let them. The intern seemed to think that was

the sight of the bone graft harvest, but I've had that knot for a long time, way

before my surgery. I still think it's the piri muscle that hasn't calmed down. I

asked Dr. Hu and the intern point blank if they had heard anything about the

collagen theory and they told me there are a million theories about scoli and

none of them have been proved. They think it will come down to a genetic

predispostion at some point. I also asked the intern what he thought about my

decision to just take care of my lumbar area vs. doing my whole spine and

correcting the thoracic area. He sees merit in just doing the part that is the

problem at the time. He did say that I am " bone on bone " just above the fusion

at L4-5 (so maybe L2 or L1). I told him that I am worried about that L1, T12

area. They didn't have any real suggestions. Interesting though, that they STILL

don't want me to exercise beyond the 90 degree

parameter for another 2 months, until it's been 6 mo. She says it takes awhile

for the fusion to really take place, altho they did see some " fluffy " stuff on

the Xray that was indication of fusion happening. And still no

anti-inflammatories. So I must continue with narcotics. I don't know why I wrote

all this, but it feels good to reaffirm where I'm at. I still have my concerns

and I don't know how this will all hold up and where I'll be in 10 years. So for

now, I think I'm going to stretch more and enjoy what I've got at this moment.

Thanks for listening.

Debbie

Beverlee <bea_simmons@...> wrote: I'm 57 as well !! I haven't

heard any stats on curves. I've said before that I am ashamedly passive about my

care at times. I look for the best person and turn myself over to him/her. I

think it has to do with stress maintenance. My way of dealing with things. I

heard one dr call my curve a teacup handle. I had a lot of rotation, a whole

lot. first had problems because of discs " falling " out of place at the bottom of

the curve, just as it was about to go into the straight base, if that makes any

sense. I only had one measurement given me- a 65 degree curve before surgery.