Re: To All - Who performed your first fusion and when?

June 30, 2006

Hi ,

Welcome to the group! We're happy you've joined!

And thanks for the info about your surgeon - I've added him to my

list and now have 70 docs. As you may know, a few of us are tryingto

figure out how many people today have had H-Rod fusions - we'd like

to know how many of us are out there!

It sounds like you've had a lot of pain over the years - I'm so

sorry to hear that. I know that most, if not all, of the members can

certainly relate. I had a 56 degree curve and my first fusion at 18

in 1973 (to 26 degrees). I had about 20 good years and then

developed flatback, sciatica, stenosis, and referred pain and was

practically overdosing on Ultram. It was the only way I could work

and have a semblence of a life.

I finally had revision surgery in 2003 and I'm fused from my sacrum

to between my shoulder blades. I'm still taking Ultram and

exercising (stretching) like crazy to stay functional. It seems like

for most of us our lives center on managing our pain. It can get

pretty discouraging, that's for sure.

It's great that you have help - I'm sure that takes a lot of

pressure off of you. Still, with two young kids it must be rough at

times. It's rough having two young kids and NO disabilities!

You ask a good question, and I'm hoping one of the Feisties here can

help you with it: are the later surgeries very different from the

earlier ones, in the 70s. I suspect the answer is 'no' considering

the fact that you describe having developed a degree of flatback.

That's a direct result of the limitations of the older system.

Is there an experienced revision surgeon near you? It seems like

that would be who you would need to consult with in order to figure

out your leaning-forward problems.

Please post again!

Best of luck,

Andy Stanton

>

> Hi all,

> I haven't posted before, but thought I'd add my stuff:

> My name is . I had my surgery at age 13 in 1989 at UW-

Madison

> by Dr. Mann. He's still there, and is very personable, even

has

> answered emails from me when I've had questions over the years.

> I had harrington-luque rods (is this drastically diff from regular

> harrington??) and was fused t4-l4. Was told I'd need to have a

2nd

> surgery to the sacrum at some point in my life, but now have been

told

> they like to avoid that if possible. My original curves were in

the

> low 70s and got corrected to about 50-55 each. I have a lot of

lower

> back pain, especially the side with the lower curve.

> I am 30 yrs old, have a 1yr old and a 2.5 yr old. I currently use

a

> walker & a wheelchair because I have secondary progressive

multiple

> sclerosis. When I am walking, I am bent way forward. Docs seem

to

> like to shuffle me back & forth when I have problems - neuros say

it's

> orthopedic, orthos say is neurological. I have a good neuro now,

but

> would like to still get my fusion checked by someone good. I have

a

> personal assistant provided by the state who helps with cooking,

> cleaning, shopping, driving, etc for 25hr/wk. That has been a

> lifesaver for me! My family & my hubby's family are also

incredibly

> supportive.

> Anyone know how possible flatback-types of problems are in someone

who

> had an extensive harrington/luque surgery in the late 80s? When I

> checked into it several years ago, most people seemed to think it

only

> affected those fusions from the 60s and 70s.

> Thanks for listening!

>

June 30, 2006

Thanks for the welcome! I should add that " regular " orthos that I've

been sent to in the past (you know how HMOs are..) take a quick peek

at my x-rays and just say " wow you still have big curves, but the

fusion looks solid " and then mumble something about maybe seeing a

neurologist. For me, the multiple sclerosis (I have a quite

aggressive form and will be starting chemo next month) takes

precedence medically, but I don't want to be left in the dark if some

of my mobility problems may indeed be due to spinal issues. I live

between Madison and Chicago, and have heard the name Ondra from

Chicago. I am homebound and it's difficult for me to get in to see

docs though. Another hard thing to deal with is that I had to go on

disability at age 28! I was ready to start a fulltime position as a

community college biology professor, my absolute dream job, at a

school I loved and the progression of MS just went crazy (as I was

preg with baby #2). It's quite an adjustment to go from hiking

mountains, camping, being " normal " , to not even being able to take a

standing shower, drive, or go check my mailbox. It has really made

me appreciate every tiny thing that people take for granted So I

guess it's not all bad, eh?

> >

> > Hi all,

> > I haven't posted before, but thought I'd add my stuff:

> > My name is . I had my surgery at age 13 in 1989 at UW-

> Madison

> > by Dr. Mann. He's still there, and is very personable,

even

> has

> > answered emails from me when I've had questions over the years.

> > I had harrington-luque rods (is this drastically diff from

regular

> > harrington??) and was fused t4-l4. Was told I'd need to have a

> 2nd

> > surgery to the sacrum at some point in my life, but now have been

> told

> > they like to avoid that if possible. My original curves were in

> the

> > low 70s and got corrected to about 50-55 each. I have a lot of

> lower

> > back pain, especially the side with the lower curve.

> > I am 30 yrs old, have a 1yr old and a 2.5 yr old. I currently

use

> a

> > walker & a wheelchair because I have secondary progressive

> multiple

> > sclerosis. When I am walking, I am bent way forward. Docs seem

> to

> > like to shuffle me back & forth when I have problems - neuros say

> it's

> > orthopedic, orthos say is neurological. I have a good neuro now,

> but

> > would like to still get my fusion checked by someone good. I

have

> a

> > personal assistant provided by the state who helps with cooking,

> > cleaning, shopping, driving, etc for 25hr/wk. That has been a

> > lifesaver for me! My family & my hubby's family are also

> incredibly

> > supportive.

> > Anyone know how possible flatback-types of problems are in

someone

> who

> > had an extensive harrington/luque surgery in the late 80s? When

I

> > checked into it several years ago, most people seemed to think it

> only

> > affected those fusions from the 60s and 70s.

> > Thanks for listening!

> >

>

July 3, 2006

Hi in Oakland,

Thanks for posting your docs - they were new to me. I now have the

names of 72 docs who performed scoliosis fusions. I'm trying to find

out how many of us " fusion survivors " are out there. My own surgeon,

Dr. Keim, tells me he performed 3500 fusions over the course of his

career. If each of the 72 docs did do, too, that means there are

over 250,000 of us!

Andy

Concord MA

>

> >I have tried to figure out for years how I missed

this " Harrington Rod "

> >business. I had my surgery done in 1965 in Cleveland, Ohio at the

Cleveland

> >Clinic. But I have rough scars on both of my hips due to them

grafting bones

> >from my hips to my spine. No rod. I'm told that they used my own

> >bones for the

> >grafting instead. I don't know if that is unusual or rare or more

> >important.....why.

>

> I had surgery in 1966 and 67, without hardware, for an S curve,

and

> they also took bone from my hip (but no scars on my skin) They

went

> in the back, unlike the way they do it now.

>

> I had pain after my son was born in 1982, and my new doctor

> recommended the Harrington Rod.

>

> Since I had just had 6 mos. in bed to have my son, and a C-

section, I

> told him not now!

>

> So I escaped that, but then had more surgeries to put in hardware,

> since the fusions do

> not hold (they didn't fuse all the way down, and the vertebrae

that

> weren't fused continued the Scoliosis. (In the old days, they told

us

> this wouldn't happen--they thought as soon as you went through

> Puberty, the curves would stop.)

>

> My original Doctor, Dr. R. Kirklin , had studied under Dr.

> Risser, the top guy for Scoliosis in those days. But he told my

> parents I would never have a day of pain in my life after the

> surgery. Hah! I still have lower pain after 4 more operations!

>

> The " bone glue " that they have now really works now. And you don't

> have to have the awful, full-body plaster casts that killed our

> social lives in those days!

>

> I hear young people complain about the braces they have now. I

wore

> one after the ops in 2000 and 2001, they were a piece of cake

> compared to those awful casts!

>

> in Oakland

>

July 4, 2006

Andy,

I had my only back surgery in Boston in 1992 for severe scoliosis. I have

Harrington/Luque rods and am fused from T6 to L5. Bone for grafting was taken

from the back of my left hip and the spot has never given me any trouble.

My doctor is retired due to illness, so I am not posting his name, but I

really did love him. He was so holistic!

Having just survived an awful surgery for other " things " , I have no plans

for future spine surgeries. Often I wonder if people understand just what an

assault on the body that type of surgery really is! I often tell people that

orthopedic surgery is so much harder to recover from than is abdominal/tissue

surgery! Believe me, I have ample experience from which to make that

observation.

Good luck to you!

Carole M.

July 5, 2006

I had my surgery in Dublin Ireland performed by Mr Dowling i think

he is still around.

July 1981 - Harrington rod

November 1981 Harrington Rod Replacement

Feb 1982 Harrington Rod Removal

>

> Hi Everyone,

>

> I'm trying to figure out how many of us had Harrington Rod surgery

> during the years between 1960 and 1990, for a possible book.

>

> Can you please tell me the name of the surgeon who performed your H-

> Rod surgery, in what city he/she performed the surgery, and in what

> year you had the surgery?

>

> Do you know if your surgeon is still alive and where he/she now lives?

>

> THANKS!!!!

>

> Andy

> Concord MA

> Revision - Boachie - NY - 2003

> Original - Hugo Keim - Columbia Presbyterian Hosp, NY - 1973

>

August 16, 2006

Hi Andy...

Thought you might have some interest in this:

http://www.scoliosis.org/forum/showthread.php?t=3997 & page=2

Regards,

>