Re: Flatback

[Guest guest]

Peggy...

Like everything else, it depends on the individual and the surgeon.

I've heard of doctors telling their patients to plan on waiting 6

months. I also someone who claims HE had sex while still in the

hospital.

Regards,

J Leger wrote:

>

>

> ----Original Message-----

> From: & Peggy Greene [mailto:jpgreene@...]

> Sent: September 11, 2000 8:18 PM

> Scoliosis Treatment-owneregroups

> Subject: Re: Re: flatback

>

> If this is a legitimate question will you please post it for me? Feel free to

ask me to re-phrase it if necessary.

>

> For those of you who have had surgery for flatback or who will be having

surgery soon, how will the surgery affect your intimate relationship with your

significant other? Will it be impossible or difficult to " you know " after

surgery? Because if that is the case I only want surgery as a last resort! My

husband is quite a bit older than me and I know we aren't going to have a lot of

years together (we'll only make it to our 25th Anniversary if he lives to be

79)! If surgery will end that part of our relationship, I don't want to have

surgery now after being married only a year! If surgery improves things, then I

would like to know that also. I'm not in pain or disabled enough at this point

that I need surgery right away. If having surgery before it gets too bad would

give me 20 great years of little pain, etc., then I would seriously consider

doing it next year or so. Otherwise I'll probably wait until it's absolutely

necessary. I hope I haven't offended anyone by asking such a question. I don't

need details, just want to know if " that " is better, the same or worse after

surgery. Maybe y'all want to know but everyone's been afraid to ask! :-) You

may answer privately if you so desire. Thanks!

>

> Peggy Greene

> JPG Unlimited

> Antiques & Collectibles

> jpgreene@...

>

>

[Guest guest]

It sounds as if the doctor did do quite a bit to help you out there.

That part is good. However, from my personal experience, the typical

ortho doc can do the regular scoliosis surgery just fine, but they

never seem to connect the fact that all that fusion is going to cause

the forward tilt or flatback. If they do, they never seem to tell the

patient about it. Some of the people on this group had the

laminectomy done before undergoing the revision (osteotomies) at a

later date. I personally have had the flatback for many years not

knowing what it was. I don't tilt that much, but I do compensate by

bending my knees. I had my surgery done 32 yrs ago, and now that I

look back on it, I actually had flatback from the beginning, but it

did get some worse as the years have gone on. What I have now is

severe degenerative disc disease and stenosis and other nerve issues

causing me the pain. I have scheduled a revision surgery on March 6,

2007, and the doctor is going to fuse me to the sacrum and take care

of all the disc problems/pinched nerves, but I told her (Dr. Serena

Hu) that I want it ALL DONE AT ONCE that I couldn't see just doing

the disc thing knowing I would have to come back again at another

time to do the osteotomies. She agreed. My local doc that I saw

awhile back didn't seem to know about osteotomies. But I'm sure he

wasn't trained in doing them, and I've noticed that if doctors aren't

trained in something they rarely discuss it or recommend it. A few

doctors (and I mean a FEW) do realize when something is beyond their

ability and they will refer you to someone else, and that's how I

ended up at Dr. Hu's. I saw another doctor here. (California) Since I

live in California, I can't say who would be good in your state to

see about this, but you need to see one of the half dozen or so

doctors that are regularly discussed here. They are the ones that can

do the osteotomies RIGHT and get you back to where you should be.

Perhaps there's someone from your area of the country that can

recommend someone near you for that. Good luck, and hoping that you

get some answers.

Carol V (CA)

>

> Hello,

>

> I'm new to this group and very pleased that there is a place to

ask questions

> and get support!

>

> I live in Ann Arbor, MI and am 69 years old .

> In January of 2006 I had scoliosis surgery. I had a 60 degree curve

that began

> in 1992. I also had some torque or twisting (is that the word?) to

the left and

> was somewhat bent over.

> I spent 2 years researching what to do . I read several books and

all the

> articles I could get my hands on and it became apparent that

surgery was the

> only course of action.

> After meeting with several doctors, I decided to go with Glenn

Minster in

> Detroit.

> He diagnosed me with scoliosis with spinal stenosis.

> He recommended a posterior T10-S1 fusion and a laminectomy and

> foraminotomy, L4 to S1.

>

> Before the surgery he told me that he would be able to correct the

curve and

> the torque at least 50%. We did not discuss what he would do to

address my

> not standing up straight, but everything I have read says THE most

important

> goal in scoliosis surgery is to regain sagittal balance and I so

assumed that

> would mean correcting my pelvic tilt..

>

> After the surgery I wore a brace for 5 months. Minster braces all

his patients

> and I'm not really sure why he does this.

>

> I am satisfied with the decrease in the curve and the torque.

However, one

> year post surgery, and after 3 months of PT 3 times a week, I am

not able to

> stand up straight. It's better, and I can only stand straight if I

bend my knees,

> standing and walking is quite tiring.

>

> At my last appointment in October, I told Minster I was concerned

and he

> recomended hip extension exercises. I received a copy of the report

and he

> mentions we " discussed the possibilities of osteotomies if the

condition does

> not improve. " I was surprised because we NEVER discussed this.

> I have read a bit about revision surgery and it sounds really risky.

>

> Before even considering MORE surgery, I want to get another

opinion about

> this surgery and my question is: Since I already had a tilt before

the surgery,

> could the pelvic tilt have been 100% corrected during surgery ? Did

the

> surgeon do everything he could have done to correct it ?

>

> It would be so helpful to hear from anyone who shares this

situation.

> Phyllis Ponvert

>

[Guest guest]

Hi Carol...

A few comments... First, creating forward tilt or flatback by doing spinal fusion is relatively rare these days. Unfortunately, as Phyllis has discovered, it does happen. Second, I would personally NEVER trust a general orthopaedist to do a scoliosis surgery.

Regards,

On 1/10/07 7:34 PM, " Carol " <dcvaughan@...> wrote:

However, from my personal experience, the typical

ortho doc can do the regular scoliosis surgery just fine, but they

never seem to connect the fact that all that fusion is going to cause

the forward tilt or flatback. If they do, they never seem to tell the

patient about it.

[Guest guest]

Hi Phyllis,

Welcome again. When you posted an introductory post on Jan 3rd

message #13174, you got a few posts and never answered....did you get

them? between those replies and Carols good advice and observation

you have some consensus here....it may be time for a second opinion!

None of us are doctors. It is hard to know if your doctor has not

done enough, or if perhaps he did too much. I can't tell from your

post if he was correcting you to give you a better function from a

postural point of view or was more concerned with the forces and

pressures begin exerted on your internal organs from the progressing

curve.

Most of us come to our flatback not as an immediate consequence of

the surgery per se, but really more as a function of the forces of

time and geometry. I don't think the result is necessarily all that

different from you in terms of how our treatments proceed going

forward, but we tend to be a little younger and this may have had

some effect on what your surgeon could do.

My surgeon prefers to break the surgery into a two day, 3 stage

process partly to minimize some of the chances of complications from

a long one day event complete with osteotomies. Getting sagittal

balance is the key factor in patient satisfaction according to the

research I have read, so if you are tilted you are not crazy for

wanting resolution. That said, it is still a big surgery, and I

expect in some regards, the clock is ticking.

If you feel your doctor is not being " straight " with you it is hard

to believe you can have much confidence in sticking with him without

finding a way to develop new confidence in his abilities via a second

opinion. The doctors that we usually recommend for second opinions

are close enough that you might want to consider a road trip. NYC,

Boston, ST Louis or Texas. They key thing is to find out what the

range of your choices are and act on them if possible.

My sense is as Carol has so eloquently captured it...most doctors

rightfully recognize that the osteotomy is a challenging technique

and in less than skilled hands can have devastating consequences...so

they avoid it. And most of them don't seem too willing to send a

patient on to someone who is capable. I don't know why this is....it

does seem that when you look at the research that really this

technique has only been brought to the fore in more recent times, so

perhaps many of the scoli doctors never really perfected their

technique?

I would recommend that you ask your doctor how many osteotomies he

has performed, and to what satisfaction of his patients, and ask to

speak to them. If he hesitates, or can't tell you he has fixed a

problem like yours many many time (50-100 times), you need to think

about moving on.

The last thought I have would be to examine your PT needs. If you

walked around tilted forward from the primary untreated scoliosis for

65 years, it stikes me that your whole underlying musculature needs a

lot of " retraining " ...so ask yourself if you have been diligent and

done all your exercises and pushed your PT to explore every trick in

the book to work those hip flexors. I am guessing you would need to

be on a dialy home regime supported by PT, myofascial massage, maybe

some aquatic therapy....all techniques most of us have have some

level of success with. It might not be the whole solution....but at

least it probably couldn't hurt. If the PT you work with has a lot of

experiences working with long fusions...so much the better...if

not...again, maybe it would be worth looking to see who else in your

area might have a different view. A new set of eyes or ideas couldn't

hurt!

Take Care,

Cam

[Guest guest]

Dear Phyllis,

I'm curious, are you in pain with your inability to get upright, you mention tiredness from walking, but not pain. I think Cam brings a good point, since you now are facing flatback ( especially since your doc mentioned osteotomies in his notes) is where do you go from here. A second opinion is a key step, and I wish it was true that any ortho doc would do for that opinion, but given the Flatback, not even any Spine doc would do. There are a couple of handfuls of doc's nationally that do this work often, names are often spoken here. I would consult one of them for a second opinion. I'm not a doc. and tend not to second guess a surgeon, and yours may have done all he could but you had an unfortunate outcome to your surgery. But given where you are at, and your age, I think consulting one of the top doc's doing Flatback surgery would be key.

You are right in thinking that you need a second opinion, to see how another doc would handle where you are at now. I know some of us have been shocked after getting copies of doctor notes reading things we were sure weren't spoken to us during our visit. Your doc's mentioning of osteotomies in the notes and not to you, while troubling in my mind, at least you have it on paper what is going through his mind. Did he ever mention Flatback, or is this your assumption based on reading his notes? How did you become aware of flatback if not from your doc?

So now is the going forward moment, see at least one more doc for an opinion, and weigh if your doc has the experience and your confidence to go forward with what maybe another surgery. Compile a huge list of questions, and ask away to any doc you see. Tons of good info on the site, even a very good list of questions to ask a prospective doc. I'm sorry you are at this point, especially so quickly after your first surgery, but alas you are. So please let us know about who you consult, and how it goes. You have a very level head about yourself, and are weighing things carefully, and know you have all of us supporting you while you make your journey!

Colorado Springs

[ ] Flatback

Hello,I'm new to this group and very pleased that there is a place to ask questions and get support!I live in Ann Arbor, MI and am 69 years old .In January of 2006 I had scoliosis surgery. I had a 60 degree curve that began in 1992. I also had some torque or twisting (is that the word?) to the left and was somewhat bent over.I spent 2 years researching what to do . I read several books and all the articles I could get my hands on and it became apparent that surgery was the only course of action.After meeting with several doctors, I decided to go with Glenn Minster in Detroit.He diagnosed me with scoliosis with spinal stenosis.He recommended a posterior T10-S1 fusion and a laminectomy and foraminotomy, L4 to S1. Before the surgery he told me that he would be able to correct the curve and the torque at least 50%. We did not discuss what he would do to address my not standing up straight, but everything I have read says THE most important goal in scoliosis surgery is to regain sagittal balance and I so assumed that would mean correcting my pelvic tilt..After the surgery I wore a brace for 5 months. Minster braces all his patients and I'm not really sure why he does this.I am satisfied with the decrease in the curve and the torque. However, one year post surgery, and after 3 months of PT 3 times a week, I am not able to stand up straight. It's better, and I can only stand straight if I bend my knees, standing and walking is quite tiring. At my last appointment in October, I told Minster I was concerned and he recomended hip extension exercises. I received a copy of the report and he mentions we "discussed the possibilities of osteotomies if the condition does not improve." I was surprised because we NEVER discussed this.I have read a bit about revision surgery and it sounds really risky.Before even considering MORE surgery, I want to get another opinion about this surgery and my question is: Since I already had a tilt before the surgery, could the pelvic tilt have been 100% corrected during surgery ? Did the surgeon do everything he could have done to correct it ? It would be so helpful to hear from anyone who shares this situation. Phyllis Ponvert

[Guest guest]

Hi, Phyllis!

I'm in the downriver Detroit area, and saw Dr. Stanley Lee to check in

about my back. He deals with MANY post scoliosis surgery patients, and

I would highly recommend him for a second opinion. He's at U of M. I

know he's local to you, but you may want to check on insurance

coverage. U of M takes most plans, that I'm aware of.

There are a few others with some similar in the area too. R.

thought Geiger in Ypsilanti and Montgomery in Royal Oak

might be good for me to check out since both did fellowships in

Minnesota, where many of the top revision specialists originally

trained and/or worked. And, Stanley Lee in Ann Arbor did a fellowship

in St. Louis (with Dr. Bridwell).

Best to you!

Deb M.

>

> Hello,

>

> I'm new to this group and very pleased that there is a place to ask

questions

> and get support!

>

> I live in Ann Arbor, MI and am 69 years old .

> In January of 2006 I had scoliosis surgery. I had a 60 degree curve

that began

> in 1992. I also had some torque or twisting (is that the word?) to

the left and

> was somewhat bent over.

> I spent 2 years researching what to do . I read several books and

all the

> articles I could get my hands on and it became apparent that surgery

was the

> only course of action.

> After meeting with several doctors, I decided to go with Glenn

Minster in

> Detroit.

> He diagnosed me with scoliosis with spinal stenosis.

> He recommended a posterior T10-S1 fusion and a laminectomy and

> foraminotomy, L4 to S1.

>

> Before the surgery he told me that he would be able to correct the

curve and

> the torque at least 50%. We did not discuss what he would do to

address my

> not standing up straight, but everything I have read says THE most

important

> goal in scoliosis surgery is to regain sagittal balance and I so

assumed that

> would mean correcting my pelvic tilt..

>

> After the surgery I wore a brace for 5 months. Minster braces all

his patients

> and I'm not really sure why he does this.

>

> I am satisfied with the decrease in the curve and the torque.

However, one

> year post surgery, and after 3 months of PT 3 times a week, I am

not able to

> stand up straight. It's better, and I can only stand straight if I

bend my knees,

> standing and walking is quite tiring.

>

> At my last appointment in October, I told Minster I was concerned

and he

> recomended hip extension exercises. I received a copy of the report

and he

> mentions we " discussed the possibilities of osteotomies if the

condition does

> not improve. " I was surprised because we NEVER discussed this.

> I have read a bit about revision surgery and it sounds really risky.

>

> Before even considering MORE surgery, I want to get another opinion

about

> this surgery and my question is: Since I already had a tilt before

the surgery,

> could the pelvic tilt have been 100% corrected during surgery ? Did the

> surgeon do everything he could have done to correct it ?

>

> It would be so helpful to hear from anyone who shares this situation.

> Phyllis Ponvert

>

[Guest guest]

Hi Phyllis,

Like people have already said, it's very important to have someone

experienced in revision surgeries try to correct your flatback. You

are somewhat in my area (I'm near Rockford, IL) and the closest

experienced surgeon that I know of is Dr. Ondra at

Northwestern University in Chicago. Once I faxed his office my x-

ray report and a letter explaining my situation, they had me an

appointment in a little over a week. My hubby faxed the info on a

friday afternoon, they called me on monday afternoon, and I was in

his office the next week tuesday. His office staff was very

courteous, and his nurse has promptly answered any questions I

called about. I saw his partner Dr. Koski too, and both of them are

great. They took a lot of time in the office with my husband & I,

there was no " rushed " feeling. I would highly recommend him for an

opinion. I have not had flatback surgery yet myself, but if I do, I

will go to him for it.

Another midwest surgeon that people mention a lot is Dr. Bridwell in

St Louis.

>

> Hello,

>

> I'm new to this group and very pleased that there is a place to

ask questions

> and get support!

>

> I live in Ann Arbor, MI and am 69 years old .

> In January of 2006 I had scoliosis surgery. I had a 60 degree

curve that began

> in 1992. I also had some torque or twisting (is that the word?) to

the left and

> was somewhat bent over.

> I spent 2 years researching what to do . I read several books and

all the

> articles I could get my hands on and it became apparent that

surgery was the

> only course of action.

> After meeting with several doctors, I decided to go with Glenn

Minster in

> Detroit.

> He diagnosed me with scoliosis with spinal stenosis.

> He recommended a posterior T10-S1 fusion and a laminectomy and

> foraminotomy, L4 to S1.

>

> Before the surgery he told me that he would be able to correct the

curve and

> the torque at least 50%. We did not discuss what he would do to

address my

> not standing up straight, but everything I have read says THE most

important

> goal in scoliosis surgery is to regain sagittal balance and I so

assumed that

> would mean correcting my pelvic tilt..

>

> After the surgery I wore a brace for 5 months. Minster braces all

his patients

> and I'm not really sure why he does this.

>

> I am satisfied with the decrease in the curve and the torque.

However, one

> year post surgery, and after 3 months of PT 3 times a week, I am

not able to

> stand up straight. It's better, and I can only stand straight if I

bend my knees,

> standing and walking is quite tiring.

>

> At my last appointment in October, I told Minster I was concerned

and he

> recomended hip extension exercises. I received a copy of the

report and he

> mentions we " discussed the possibilities of osteotomies if the

condition does

> not improve. " I was surprised because we NEVER discussed this.

> I have read a bit about revision surgery and it sounds really

risky.

>

> Before even considering MORE surgery, I want to get another

opinion about

> this surgery and my question is: Since I already had a tilt

before the surgery,

> could the pelvic tilt have been 100% corrected during surgery ?

Did the

> surgeon do everything he could have done to correct it ?

>

> It would be so helpful to hear from anyone who shares this

situation.

> Phyllis Ponvert

>

[Guest guest]

Hello everone,

I’d love to hear from folks who had a forward tilt before scoliosis surgery and still can’t stand up straight. Do you plan to have revision surgery?

Phyllis Ponvert

From: Deb <daveanddeborah@...>

Reply-< >

Date: Thu, 11 Jan 2007 14:33:13 -0000

< >

Subject: [ ] Re: Flatback

Hi, Phyllis!

I'm in the downriver Detroit area, and saw Dr. Stanley Lee to check in

about my back. He deals with MANY post scoliosis surgery patients, and

I would highly recommend him for a second opinion. He's at U of M. I

know he's local to you, but you may want to check on insurance

coverage. U of M takes most plans, that I'm aware of.

There are a few others with some similar in the area too. R.

thought Geiger in Ypsilanti and Montgomery in Royal Oak

might be good for me to check out since both did fellowships in

Minnesota, where many of the top revision specialists originally

trained and/or worked. And, Stanley Lee in Ann Arbor did a fellowship

in St. Louis (with Dr. Bridwell).

Best to you!

Deb M.

[Guest guest]

Hi

I have walked for 20 years with a slumped foward back I had the

harrington rods placed in me when I was 19 yrs old. I am looking up

information and advice for the corrective surgery.

[Guest guest]

,

Hi, thank you its so good to know I am not alone. How long was your

recovery period? and do you know have the natural bottom curve?

thanks

[Guest guest]

Hi Camille,

Welcome to the group. I think if you spend some time going back

through old posts and going into our files section under member

stories you will find old information relevant to you. Unfortunatly

the (free) format is not as functional for tracking back on

specific members posts...and when the subject line isn't changed

sometimes it is difficult to tell if a particular old post applies

for you...but you will still learn lots.

Also, unfortuantely, your story is not that rare amongst us older HR

patients....in fact although I never had my rods removed I did have

about 32 good years out of my HR surgery....and then a fairly quick

downward spiral once good old L5 gave up the ghost. A number of

members have had some luck with maintaining low weight, fitness and

flexibilty. Some have used yoga and pilates to good result (See the

links section). One patient had luck with prolotherapy. Most of us

probably rely on altering the daily routine to acccept increasing

pain levels as things get worse.

If you have a reliable flatback diagnosis, then my view as a patient,

not a medical person, is that as night follows day, things will get

worse without surgical intervention. The more you tilt forward the

more loading you are placing on the muscles, discs and ligaments that

support your torso. If the tingling and numbness you are experiencing

now is related to compression of the sciatic nerve, until that

pressure is relieved (by decompressing the nerve root and standing

your back up into proper alignment)you can expect more of the same,

or worse. The good news is that you should be able to put surgery

off for as long as you are willing to put up with the pain and

compromises, except for a few instances where emergency surgery would

be indicated. It sounds like the doctor who you saw did not see you

as and emergency.

Do you know what your fusion levels are currently? Are you

leaning/pitching forward much? Where do you live?

Lots more to share...but I have to start on my day. Please ask as

many questions as you would like. We are here to help, although none

of us are doctors...we are patients like you. Many of us have trod

this road before and we feel that knowing what to expect and that

there actually are other people like you in this world is a great

gift.

Take Care, Cam

[Guest guest]

Dear Camille,

Welcome to the group. So sorry you are finding yourself painful now. Would love to hear more about you, where you are located, what doctor you saw that diagnosised your Flatback, what that doc gave you in terms of ideas to manage your Flatback. I had my Harrington Rod for 27 years, had it removed in 2000, during a decompression surgery that unfortunately gave me little time till revision was necessary for me. I got 11 good years out of my Harrington Rod, then after the birth of my first child, got painful, shooting pain down my leg to my foot. At first it came and went, but as the years ticked on, and more and more doc's told me to live with it( no one recognised what was wrong), the pain got worse and so did my life. I was cast forward, a real inability to hold myself upright, and that reaks havoc on ones body. My inability to walk any distance because of the pain really limited my day. Doc's at that time really just threw pills at it, and I went from 1984 till 2000, knowing something was awfully wrong, seeing doc's with no answers till we moved to Denver and I got to my surgeon and got diagnosised. Truly by that point I was surgical, I had already had MANY years of progression.

How did I deal with the pain during the years, mostly by adapting my day around the pain. I knew exactly what and for how long I could do something till the really bad pain kicked in. And most of this memory is hind sight, as while you are in the middle of it you rarely recognise what you are doing to adapt. It wasn't till I got to my Dr. Kumar and he asked very pointed questions did I realize just how screwed up I was. Then when I got home from my diagnosis, I looked up Flatback on the internet, and good golly I had every symptom listed there, a true classic case.

Is there hope, you bet. Will you eventually get surgical, that's for you and your doc to decide. You will know when you have had enough with the pain. This is basically a structural and positional problem, the loss of Lordosis finds you falling forward, your discs below your fusion wear out, and in my case really bad stenosis and arthritis. Can other things help before surgery, sure and have for many here, but for me the only fix was surgery. Exercise and keeping ones weight under control help. Many have found swimming to be an excellent help. Many rely on good pain mgt doc's, with med's and injections get some relief. Some try massage and find some help there. I'm not a doc but a patient, but eventually most of us come around to the fact that we need to get our spines revised surgically to get a better alignment. Will that make everyone completely painfree, no, but greatly improves the situation. I have had three post Harrington Rod surgeries, a decompression, and two revisions, and while it was hard and daunting, I count myself among the lucky, for me the pain is gone, and now five years out from my last surgery, I'm glad everyday I had surgery, and am blessed by my surgeons skills.

So welcome, there is tons to read on the site itself, so read and learn, and know we are here to support. Member stories section is good, you will find yourself there among other members stories, I sure did. Sorry you have to find yourself among our ranks, but it's good to be among friends who" Get it".

Colorado Springs

[ ] Flatback

I had the harrington rod put in 30 years ago and removed 25. I have been able to enjoy life almost pain free up until the last few years. Last year my left leg went numb and tingling and now has pins and needles occuring occasionally. I have been diagnosed with flat back syndrome. Can anyone fill me in on what to expect? or how to slow down the progression?

[Guest guest]

Thanks for responding - can't believe how comforting it is to know that I am not alone, that there have been others who have gone through this - and much worse. I actually had my orginal surgery in Denver by Odom. I live in Salt Lake and was able to find a great doctor up the University of Utah who specializes in adult scoliosis. Like you, after going to several doctors who really didn't know or understand what was happening, I was diagnosed with steniois. After doing research on that and realizing that effects a lot of people I started wondering how comfortable I was having someone operating on me that treated a fused back like it happens all of the time. And that is when I started looking into harrington rod issues and look what I found. It is good to hear that you are glad for your surgery and that it has helped. My doctors advice was to keep the weight off and keep moving and call

him if the pain became unbearable - otherwise to check back with him in six months. So far, I am able to manage the pain on most days. I was almost ready to call him a few weeks ago, but gave myself four more days and by monday I was able to handle the pain. You mention you had children - have any been diagnosed with scoliosis? My daughter wore a brace for 4 years, which kept the curves managable. But last year, when we went back for a check up, her curves had increased (shes 19). My niece had scoliosis surgery two years ago. Thanks for your encouragement Camille Kirkaldie <.Kirkaldie@...> wrote: Dear Camille, Welcome to the group. So sorry you are finding yourself painful now. Would love to hear more about you, where you are located, what doctor you saw that diagnosised your Flatback, what that doc gave you in terms of ideas to manage your Flatback. I had my Harrington Rod for 27 years, had it removed in 2000, during a decompression surgery that unfortunately gave me little time till revision was necessary for me. I got 11 good years out of my Harrington Rod, then after the birth of my first child, got painful, shooting pain down my leg to my foot. At first it came and went, but as the years ticked on, and more and more doc's told me to live with it( no one recognised what was

wrong), the pain got worse and so did my life. I was cast forward, a real inability to hold myself upright, and that reaks havoc on ones body. My inability to walk any distance because of the pain really limited my day. Doc's at that time really just threw pills at it, and I went from 1984 till 2000, knowing something was awfully wrong, seeing doc's with no answers till we moved to Denver and I got to my surgeon and got diagnosised. Truly by that point I was surgical, I had already had MANY years of progression. How did I deal with the pain during the years, mostly by adapting my day around the pain. I knew exactly what and for how long I could do something till the really bad pain kicked in. And most of this memory is hind sight, as while you are in the middle of it you rarely recognise what you are doing to adapt. It wasn't till I got to my Dr. Kumar and he asked very

pointed questions did I realize just how screwed up I was. Then when I got home from my diagnosis, I looked up Flatback on the internet, and good golly I had every symptom listed there, a true classic case. Is there hope, you bet. Will you eventually get surgical, that's for you and your doc to decide. You will know when you have had enough with the pain. This is basically a structural and positional problem, the loss of Lordosis finds you falling forward, your discs below your fusion wear out, and in my case really bad stenosis and arthritis. Can other things help before surgery, sure and have for many here, but for me the only fix was surgery. Exercise and keeping ones weight under control help. Many have found swimming to be an excellent help. Many rely on good pain mgt doc's, with med's and injections get some relief. Some try massage and find some help there. I'm not a doc but

a patient, but eventually most of us come around to the fact that we need to get our spines revised surgically to get a better alignment. Will that make everyone completely painfree, no, but greatly improves the situation. I have had three post Harrington Rod surgeries, a decompression, and two revisions, and while it was hard and daunting, I count myself among the lucky, for me the pain is gone, and now five years out from my last surgery, I'm glad everyday I had surgery, and am blessed by my surgeons skills. So welcome, there is tons to read on the site itself, so read and learn, and know we are here to support. Member stories section is good, you will find yourself there among other members stories, I sure did. Sorry you have to find yourself among our ranks, but it's good to be among friends who" Get it". Colorado Springs [ ] Flatback I had the harrington rod put in 30 years ago and removed 25. I have been able to enjoy life almost pain free up until the last few years. Last year my left leg went numb and

tingling and now has pins and needles occuring occasionally. I have been diagnosed with flat back syndrome. Can anyone fill me in on what to expect? or how to slow down the progression?

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Camille,

I completely understand the " glass half full " kind of feeling you get

when you find out there are other people facing the same challenges

you are. I beleive as kids we were pretty much alone in our scoli

surgery and felt freakish enough that we pretty much walked away from

that time without a backward glance. Didn't know anyone else who had

the big old plaster cast...and after I was done with mine I never

felt the need to. Having this all crop up late in my 40's was a

complete surprise. I thought it was my hips becoming arthritic

because I felt the pain deep in the hip area. Little did I know!

I am 3 years past revison surgery now. I had a 3 stage 2 day surgery

that was spaced a week apart. I live in Nantucket MA, usually, but

right now I am living abroad for a year with my husband and son in

Denmark, where my husband is originally from. We will be here until

July. I had my surgery in Boston with Dr Rand. It was

anterior/posterior, 2 cages,BMP, lots of pedicle screws, iliac screws

and my old HR retained but shortened by about 2 " . The recovery was

(is still?) long, but worth it to me. I have none of the crippling

sciatic pain from before surgery and can do most anything I wish. I

will never downhill ski again. This winter I actually tried X-country

when we visted Norway...but honestly...I think I am better off

sticking with my newfound love of snow shoes. I am an active and avid

swimmer and am now able to swim all 4 strokes, not at race pace, but

respectably and I swim about 1 to 1.5 miles when I go. We have been

able to walk all over the cities of Europe on this trip...and as long

as I wear good, cushiony footwear all is good. Considering that 3

years ago a trip to the supermarket was almost out of the

question....well....for me it has been well worth the potential risk

and long recovery that surgery brings. I have no troubles climbing

stairs.

Needless to say, deciding in favor of surgery requires many factors

to be in place, the first being your personal sense that you

are " ready " ...if ever. You will know that if it happens. In the mean

time you will benefit from learning all you can about what your

options are, how to compare what your doctor is telling you with

current thinking for the true " state of the art " revision.

I am sorry to hear that your niece is also living the " scoli "

life...although there are many of us that can say with some degree of

satisfaction that having to deal with this for our liftimes has also

been a source of learning about what is important in life at an early

age...a lesson many teens never learn.

Must run to get my son into bed...please take time to go to the

actual site and go to the menu on the left hand side. You will

see " files " ...in there go to " members stories " and you can read mine

(and others). I also have a file of my recovery...as do others. Also,

don't miss the Photos section if you want to see what my new spine

looks like...as well as a bunch of pictures from the group.

Take Care, Cam

[Guest guest]

Dear Camille,

I have heard of Odom, especially with the gals locally that I speak with from Kumar's office. I had my Harrington Rod surgery in 1973, at UCSF, as I was a California girl until the mid 90's, since then have lived in the Chicago area, Ashland OR, and Denver and now Colorado Springs. I have three children, Brittany(23), Niles(17) and Ceili(15), and a granddaughter Londynn(2). My last child has scoliosis, the other two are unaffected. Ceili was diagnosised at age 9, and her curve bebooped around in degrees for years till 8 th grade when she had to be braced( C type curve at 28 degrees). She had very effective bracing, and after a year in it 18 hours a day, she stopped growing, and after two years of follow-up has held steady and has been released from care, next check in 5 years. I am adopted so I know no family history, but Kumar is sure the way I have it, and Ceili has it, it definately would be found in my birth family. I'm fused T1 to the sacrum( so only my neck isn't fused). I have three rods, 27 screws, illiac bolts. I always tease Kumar that I have more hardware than the Home Depot, and once he said " No, you are the Home Depot!" My Harrington rod fusion mass was T5 to L3. In my second revision they had to fuse above T5 to T1, and rework my lumbar area since I had cracked my fusion mass at L3. So I have a great deal of fusions, makes things a bit tougher compensating, but I'd do it again tomorrow if need be, my results have been so good.

I know how it feels to find a group of people who truly get it. I have been part of groups like this since my diagnosis in 2000, and the group has gotten me through some tough times. It's nice not to have to explain yourself like I have to do with family and friends. Was great last year when the group got together for a retreat in North Carolina, we instantly had a kinship, like we had known each other forever, neat to see other people who moved the way we do with our very fused spines.

I pass through Salt Lake a couple times a year, as my family all live in Boise. About a 15 hour trip, but since revision I fare better driving that long way than my hubby and daughter, something to be said for all that hardware LOL!

My story is in the Files Section under member stories, I'm K, and my post revision X-rays are in the photo section. Would love to hear more of your story too.

Off to get the daughter from track practice, look forward to getting to know you better!

Colorado Springs

[ ] Re: Flatback

Camille,I completely understand the "glass half full" kind of feeling you get when you find out there are other people facing the same challenges you are. I beleive as kids we were pretty much alone in our scoli surgery and felt freakish enough that we pretty much walked away from that time without a backward glance. Didn't know anyone else who had the big old plaster cast...and after I was done with mine I never felt the need to. Having this all crop up late in my 40's was a complete surprise. I thought it was my hips becoming arthritic because I felt the pain deep in the hip area. Little did I know!I am 3 years past revison surgery now. I had a 3 stage 2 day surgery that was spaced a week apart. I live in Nantucket MA, usually, but right now I am living abroad for a year with my husband and son in Denmark, where my husband is originally from. We will be here until July. I had my surgery in Boston with Dr Rand. It was anterior/posterior, 2 cages,BMP, lots of pedicle screws, iliac screws and my old HR retained but shortened by about 2". The recovery was (is still?) long, but worth it to me. I have none of the crippling sciatic pain from before surgery and can do most anything I wish. I will never downhill ski again. This winter I actually tried X-country when we visted Norway...but honestly...I think I am better off sticking with my newfound love of snow shoes. I am an active and avid swimmer and am now able to swim all 4 strokes, not at race pace, but respectably and I swim about 1 to 1.5 miles when I go. We have been able to walk all over the cities of Europe on this trip...and as long as I wear good, cushiony footwear all is good. Considering that 3 years ago a trip to the supermarket was almost out of the question....well....for me it has been well worth the potential risk and long recovery that surgery brings. I have no troubles climbing stairs.Needless to say, deciding in favor of surgery requires many factors to be in place, the first being your personal sense that you are "ready"...if ever. You will know that if it happens. In the mean time you will benefit from learning all you can about what your options are, how to compare what your doctor is telling you with current thinking for the true "state of the art" revision.I am sorry to hear that your niece is also living the "scoli" life...although there are many of us that can say with some degree of satisfaction that having to deal with this for our liftimes has also been a source of learning about what is important in life at an early age...a lesson many teens never learn.Must run to get my son into bed...please take time to go to the actual site and go to the menu on the left hand side. You will see "files"...in there go to "members stories" and you can read mine (and others). I also have a file of my recovery...as do others. Also, don't miss the Photos section if you want to see what my new spine looks like...as well as a bunch of pictures from the group.Take Care, Cam

[Guest guest]

---

Hi-

Creating forward tilt or flatback by doing spinal fusion may be rare

these days but it does still happen and I am an unfortunate example

of this. Not only did I go to a prominent, highly experienced and

well referenced surgeon, I went to a top hospital-s Hopkins. I

had my fusion in 2000 after trying every other alternative treatment

under the sun for 10 years. Not only did my surgeon not inform me of

the possibility of having a flatback after surgery, he wouldn't admit

to me that that is what actually happened to me when I complained of

the " pushed " forward sensation at every post-op appoint. He offered

and actually removed the upper part of the hardware " to see " if that

relieved my complaints. He finally offered a subtractive pedicle

ostoetomy " if I wasn't happy with the way I looked, " but never once

mentioned the word " flatback. " He made me feel it would be for purely

cosmetic purposes. I had no intention to undergo another back surgery

by him or at that hospital. I spent 5 years in pain management

alternating pain meds and procedures (I have Hep C I got in a

transfusion in 1984 so I have to watch the meds I take) until I went

to a local spine surgery practice who treat the Wash. Redskins and

the Dr. there took one look at me and diagnosed the Flatback Syndome.

As it turned out, the subtractive pedicle osteotomy was the correct

fix, but his practice didn't do that procedure.

Praise the Lord I found this website after googling " Flatback

Syndrome " and found all of you and your help with finding the right

surgeons who do this revision and do it well. I am at a point where I

can't walk more that 15 min without pain in my groin and hips and

sleeping is very difficult. I have always been a very active and

athletic person so I know it is " time " and am hopefully planning to

have the revision sometime this year with Dr. Boachie in NYC. I am

very scared as I know now what is entailed from the first surgery in

2000. I am dreading the surgery but have to look ahead to standing

straight with much less or no pain.

I guess you can tell I am still very angry with my original surgeon

who left me with a flatback, and then caused me to waste time and

energy finding the correct diagnosis.

Hutnick

In , Racine <lindaracine@...>

wrote:

>

>

Hi Carol...

>

> A few comments... First, creating forward tilt or flatback by doing

spinal

> fusion is relatively rare these days. Unfortunately, as Phyllis has

> discovered, it does happen. Second, I would personally NEVER trust

a

> general orthopaedist to do a scoliosis surgery.

>

> Regards,

>

>

> On 1/10/07 7:34 PM, " Carol " <dcvaughan@...> wrote:

>

> > However, from my personal experience, the typical

> > ortho doc can do the regular scoliosis surgery just fine, but they

> > never seem to connect the fact that all that fusion is going to

cause

> > the forward tilt or flatback. If they do, they never seem to tell

the

> > patient about it.

>

[Guest guest]

Your right, it is hard to believe that in 2000, " they " were still doing

surgeries that created flatback. I can hardly imagine your frustration,

especially since you waited. I hope that with revision surgery you will

be able to find the relief that you seek. I was angry for a long time

also. Mine ran its course and I was able to somehow latch on to the

hope of revision, which did relieve my flatback. Thanks for sharing and

I hope this site gives you the support you seek.