Re: Not sure where I belong!

September 10, 2011

Hi Jodie!

Welcome to the group. Even though your surgery wasn't for scoliosis, there is a

good chance that your Harrington rods are causing similar issues as what they

cause those of us with scoliosis fusions. So I think you definitely belong here

What types of doctors have you seen? If you suspect flatback, I would

suggest trying to find a surgeon who specializes in adult spinal deformities,

not just a " regular " orthopedic guy. If you post the general area that you live

in, other members may be able to point you toward a surgeon that is familiar

with flatback and other spinal deformities. If it's not flatback, then

hopefully they can still give you an answer (and hopefully a solution!!)

>

> I have been reading posts on this site for a while now. I am trying to figure

out what is wrong with me and where to turn for help. I was in a serious car

accident 25 yrs ago and had a burst fracture in L1. Went into surgery, bone

from my hip was taken, fused from T11-L3 with Harringon Rods inserted. I never

had many problems until two years ago. Started with constant lower back pain

and now I hurt from my neck down to my legs. Can't sit or stand very long at

all, let alone walk or do much physical activity. Every day I wake up hoping to

feel better but that is never the case. I have been to so many drs, had so many

tests/procedures and ultimately ended up at the local Pain Clinic because I

don't think anyone knew what to do with me. I take several medications which

only helps for brief periods.

>

> I know this group is for people with scoliosis but I don't know where else to

get information about problems with Harrington rods years later that pertains to

my situation! Any help or guidance would be very appreciated.

>

> Jodie

>

September 12, 2011

Hi, Jodie --

I feel really bad for you, and I wish I knew of a group to recommend.

Some years ago we declined membership to a large group of soldiers who

had gotten Harrington rods after injury in battle -- something like that

-- because we felt their concerns were just so different from those of

people with scoliosis.

As list manager, I tend to be a little more relaxed about such things

these days. If you feel the group can he useful to you in some way,

sure, give it a try. I can't think you have flatback syndrome either --

the main focus of this group -- but have you had a recent, thorough

evaluation for various problems that could be causing all this grief?

As you say, there are few places online to get information on Harrington

rods implanted for conditions other than scoliosis. Maybe we can help

each other -- we can learn more about the problems of H. rods in general

(when they are used in someone without scoliosis) and you can learn . .

... well, something, I hope, though I'm not sure what! Just please bear

in mind that much of the stuff we deal with here will not apply to

someone without spinal deformity, and even the recommended physicians

and surgeons may not be at all appropriate for you.

That said, welcome to the Feisty group!

Best,

>

> I have been reading posts on this site for a while now. I am trying

to figure out what is wrong with me and where to turn for help. I was

in a serious car accident 25 yrs ago and had a burst fracture in L1.

Went into surgery, bone from my hip was taken, fused from T11-L3 with

Harringon Rods inserted. I never had many problems until two years ago.

Started with constant lower back pain and now I hurt from my neck down

to my legs. Can't sit or stand very long at all, let alone walk or do

much physical activity. Every day I wake up hoping to feel better but

that is never the case. I have been to so many drs, had so many

tests/procedures and ultimately ended up at the local Pain Clinic

because I don't think anyone knew what to do with me. I take several

medications which only helps for brief periods.

>

> I know this group is for people with scoliosis but I don't know where

else to get information about problems with Harrington rods years later

that pertains to my situation! Any help or guidance would be very

appreciated.

>

> Jodie

>

September 12, 2011

,

If I may be so bold, what kind of clues or hints did you find in Jodie's post

that her problem might include flatback syndrome?

You also mentioned that she could get names of doctors through our group. I

expect thst the doctors we recommend to our members with possible, potential, or

diagnosed flatback syndrome may be in a good position to refer Jodie to an

appropriate neurosurgeon or orthopedist specializing in spinal problems

resulting from serious injury, such as the car accident which damaged Jodie's

back. But are you sure these flatback specialists are the most appropriate

doctors for her particular situation if it does not involve spinal deformity? To

the best of my knowledge, most or all of " our " surgeons did their post-residency

fellowships in the area of complex deformity correction (the " complex " serving

as a kind of code for secondary or iatrogenic adult deformities, most often

sagittal).

It's pretty depressing to think that Jodie's H. rod surgery might have made her

deformed, when she presumably had no (scoliotic) deformity to begin with. You

may well be right about this -- it's just an area of uncertainty for me, and I'd

be very interested in learning more about your thinking with respect to Jodie's

plight.

Thanks,

> >

> > I have been reading posts on this site for a while now. I am trying to

figure out what is wrong with me and where to turn for help. I was in a serious

car accident 25 yrs ago and had a burst fracture in L1. Went into surgery, bone

from my hip was taken, fused from T11-L3 with Harringon Rods inserted. I never

had many problems until two years ago. Started with constant lower back pain

and now I hurt from my neck down to my legs. Can't sit or stand very long at

all, let alone walk or do much physical activity. Every day I wake up hoping to

feel better but that is never the case. I have been to so many drs, had so many

tests/procedures and ultimately ended up at the local Pain Clinic because I

don't think anyone knew what to do with me. I take several medications which

only helps for brief periods.

> >

> > I know this group is for people with scoliosis but I don't know where else

to get information about problems with Harrington rods years later that pertains

to my situation! Any help or guidance would be very appreciated.

> >

> > Jodie

> >

>

September 13, 2011

,

I asked if she suspected flatback, because 1) she joined a flatback group, and

2) she said her fusion goes to L3 - which is at a level where flatback is

sometimes possible (though it seems like L4 is more common maybe?)

I would suspect that since she doesn't seem to be getting answers from regular

orthos (assuming those are the types of docs she's been seeing), that perhaps a

surgeon who is used to seeing people with more complex issues such as ours would

be a good idea. Surgeons, such as those who see complex spinal deformities,

might be more familiar with later-in-life complications of Harrington rods than

regular orthos, if her current pain issues are indeed a result of her Harrington

rod surgery. Since she doesn't seem to be getting any answers or even any

direction from the docs she has already seen, it seems to me that she ought to

seek out the advice of someone who is very experienced with post-Harrington rod

issues. Regardless of the reason they were put in (the vast majority of those

reasons being scoliosis), it seems to me that surgeons who specialize in adult

spinal deformity would be the most experienced in post-Harrington rod issues.

That was my reasoning.

It's very possible that she doesn't have flatback, but it does appear that she

has other issues related to her Harrington rod surgery. I hope she finds help

for these issues, and like I said before - since she doesn't seem to be getting

answers from the docs she's consulted, perhaps she could find better help from a

doctor who is used to seeing Harrington rod patients - regardless of if her rods

were inserted for scoliosis or just for a regular spinal fusion. After all,

many of these surgeons do other surgeries in addition to flatback revisions.

> > >

> > > I have been reading posts on this site for a while now. I am trying to