Flatback

January 23, 2003

Marcy,

You write: " I'm having trouble finding one in Chicago " I had my revision

surgery done by Dr. Ondra of Northwestern Memorial Hospital in Jan

2001. If you review previous posts, you'll find my comments on the surgeon.

I have no regrets, have had a wonderful recovery, and have gotten my life

back thanks to this man. He is difficult to get an appointment with, but I

waited and it was worth it. I have a nursing colleague who had had the same

surgery by Dr. Ondra. Since my surgery, he has initiated a support group

which meets quarterly at the hospital. I posted the date for the next

meeting. These meetings have allowed me to meet with former patients and

hear their experiences. Also, I spent two weeks at the Rehab Institute of

Chicago and was able to speak with more of his patients. If I can be of any

help, feel free to email me off site.

Donna

...

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January 26, 2003

Diane,

Thank you for your comments. Once again, I would urge you and your

associates to communicate with us onsite and provide more details

about Dr. Ondra's cumulative experience with flatback revision

surgery.

Suzy, what have you come up with in terms of published patient series

from Dr. Ondra in your NIH or other searches?

Again, no one is questioning anyone else's experience or credentials.

But it is important to back up our recommendations with as much hard

data as possible. I personally would want to have my surgery with

someone who has had long and substantial experience in correcting

severe and complex sagittal-plane deformities. I would also be

encouraged to learn that he is in communication with a larger

community of people who perform this kind of surgery.

One thing I have found especially helpful is when spinal surgeons

make available -- preferably through academic or otherwise less

commercial sites -- their complete CVs online, and perhaps even

abstracts of their major publications.

Otherwise, I think it's safe to say that, in choosing specialized

medical care today, most patients with problems as demanding and

intricate as ours are looking for truly substantive " marketing "

information -- specifically, perhaps, for solid statistics concerning

a sizable number of patients, treated and followed over a period

sufficient to yield meaningful and useful outcome data.

I hope we will eventually have access to such information with

respect to less familiar surgeons who may not be as closely

associated with the formal " scoliosis community. "

Diane, I would also be interested to learn more about you, e.g., what

kind of nursing you do. Also, forgive me if I have already asked

this and somehow missed your reply, but what brought you to Dr. Ondra

in the first place?

>

> Marcy,

>

> You write: " I'm having trouble finding one in Chicago " I had my

revision

> surgery done by Dr. Ondra of Northwestern Memorial Hospital

in Jan

> 2001. If you review previous posts, you'll find my comments on the

surgeon.

> I have no regrets, have had a wonderful recovery, and have gotten

my life

> back thanks to this man. He is difficult to get an appointment

with, but I

> waited and it was worth it. I have a nursing colleague who had had

the same

> surgery by Dr. Ondra. Since my surgery, he has initiated a support

group

> which meets quarterly at the hospital. I posted the date for the

patients and

> hear their experiences. Also, I spent two weeks at the Rehab

Institute of

> Chicago and was able to speak with more of his patients. If I can

be of any

> help, feel free to email me off site.

>

> Donna

>

> ..

>

> _________________________________________________________________

> STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

March 18, 2003

Hi-Sorry I didn't write you sooner, my mom passed away this weekend and things have been, as you can imagine, crazy. I just yesterday saw another ortho.spine doc. as I'm presently being seen under worker's comp. and couldn't STAND the first guy they sent me too. I wasn't expecting much more than this new doc's agreement w/ the first one. Boy was I wrong! He did state that I have two mechanical things going on at once...one having to do with the worker's comp, the other not. He felt I probably had a tear in the disc material of my intervertebral discs which wasn't readily evident on the MRI or that I had a torn spine ligament which wouldn't have shown up either. This was the workers comp component. However, he did also begin telling me that there was a phenomenon that occurs w/ many prior Harrington rod patients called 'Flatback Syndrome'...before I let him get too far I did let him know I've poked around 'our' message board and other places and was somewhat familiar w/ this syndrome. He stated I had flatback, though a less serious form at the moment. That however, could be due to the fact that I had severe THORACIC lordosis before my surgery 23 years ago & it could be 'masked'. He further stated that the combination of an injury w/ the flatback was, in his opinion, slowing down the normal healing process of the disc and/or ligament injury. It might, in fact, never heal. I too have tried Vioxx, Lodine, Celebrex, and Bextra (this is a new one). None of them help my back; the Bextra does help the pain in my knee that I've developed since my injury (knee cap keeps 'floating' out of place--I wear a synthetic knee brace which does help the overall pain factor diminish). He stated revision surgery was 'terribly invasive' (true dat!) and should be a 'last resort' when pain becomes absolutely intolerable. So no, I haven't scheduled it yet....My pain is somewhat under control, with a highly modified work load and heat, and taking Ultram and Advil. He wants to give the self-healing process from the tear or disc thing a chance. The next option would be conducting a discogram and possible fusion extension (am fused to L3) as there are a couple of vertebrae still left. This wouldn't stop the inevitable degeneration, but could buy some time, according to him, prior to forcing the reviision surgery card. It's no picnic, but I'm still too frightened at the prospect of yet another operation...especially THAT one! I asked my doctor if he did revision surgeries and he said no and he didn't want to 'practice' on me (10 points for Ethics portion of the exam!). He would refer me however and had heard of Lagrone in TX, Kostiuk in MD, Bridwell, etc. He's recommended my work schedule continue to be modified, which doesn't fit in AT ALL with what I was hired to do...so it's a little frightening dangling off the Earned Income precipe. I don't know what happens to me when worker's comp. gets a hold of this latest bit of news. I'll just suck it up & hope for the best. I'm very glad you're not in pain during the day...I have been for about seven years, unbearably so since Jan. this year. Do you have a doctor you trust yet, or are you still fairly new to our scoli site 'adventure'? I'm not sure if I've answered any of your questions adequately or even at all--let me know. What's your fusion like? Take care, Fellow Sleeper of the Couch. Donna

August 25, 2003

Kathleen, was this really necessary?

flatback

> hi sherry-

> yes i know exactly how you feel. i had revisionn for flatabck 5 years ago

> and am still a mess! can't ever work. I have Fibromyalgia as well.

> please try this other ite for flatabck support, no moderator or watchdogs

> allowed there. its completely free expression no criticisms of anything!

> kathleen in NJSalvaged Sisters of Scoliosis site:

> http://forums.delphiforums.com/adultscoliosis/start

>

> www.forums.delphiforums/adultscoliosis/messages

> * LIFE IS UNCERTAIN...EAT DESSERT FIRST!*

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

August 25, 2003

Kathleen,

I know you must mean well, but I do not feel that putting down this

site is the way to go.

I have found your site to be extremely helpful and I hate to see us

pit the support sites against each other. Yes, it can get feisty

here, but generally we all come out learning more about each other

and the struggles we face.... with a few chuckles in between!

from Waco

home of the infamous Baylor Bear Basketball team!

> please try this other ite for flatabck support, no moderator or

watchdogs

> allowed there. its completely free expression no criticisms of

anything!

> kathleen in NJSalvaged Sisters of Scoliosis site:

> http://forums.delphiforums.com/adultscoliosis/start

>

> www.forums.delphiforums/adultscoliosis/messages

> * LIFE IS UNCERTAIN...EAT DESSERT FIRST!*

August 26, 2003

Dear ,

Many thanks for this comment. It was such a lift to my spirits.

As ever,

> Kathleen,

>

> I know you must mean well, but I do not feel that putting down this

> site is the way to go.

>

> I have found your site to be extremely helpful and I hate to see us

> pit the support sites against each other. Yes, it can get feisty

> here, but generally we all come out learning more about each other

> and the struggles we face.... with a few chuckles in between!

>

> from Waco

> home of the infamous Baylor Bear Basketball team!

>

> > please try this other ite for flatabck support, no moderator or

> watchdogs

> > allowed there. its completely free expression no criticisms of

> anything!

> > kathleen in NJSalvaged Sisters of Scoliosis site:

> > http://forums.delphiforums.com/adultscoliosis/start

> >

> > www.forums.delphiforums/adultscoliosis/messages

> > * LIFE IS UNCERTAIN...EAT DESSERT FIRST!*

January 6, 2004

Hello ,

I second everything that Sharon said! Welcome, and try all the " help " sites

for adults with scoliosis. Of course, I'm not sure if you actually have it,

but I am suspecting that you would be seeing the same good doctors that we

need. The other thing I would add is that the " Twisted Sister " group is a

Delphi

forum. That might make it easier to find. There is another wonderful site on

, also, moderated by Leger. I hope you will get there, as well.

At any rate, I wish you well!

Carole

January 6, 2004

Welcome, .

It sounds like you've been doing your homework, as the surgeons you mentioned,

in addition to being widely dispersed about the country, are also widely known

for revision surgery.

You did not mention whether you had a Harrington rod fusion to correct your

hyperlordosis, but if you did, that explains a lot. There are indeed people on

this list who have had revisions performed by Dr. LaGrone, and very possibly the

other two as well. I am not among them, but I can advise you that the archives

of this forum have loads of information and personal accounts, and there is a

search function which should allow you to find references to specific topics,

doctors, etc.

I myself have not encountered anyone online (or in person) before you whose

original diagnosis was swayback, but this group has a large membership of

flatback sufferers and revision veterans, though members come and go in terms of

participation. This is why searching the archives is so useful. There is also

another flatback forum, called Salvaged Sisters of Scoliosis (they welcome

" Brothers " too). I don't currently have their link in my favorites, but Google

can direct you.

We all understand the spinal crazies around here, so please hang out with us and

keep us updated on your appointments, decisions, worries, questions, etc.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

FLATBACK

DEAR FELLOW SUFFERERS

MY NAME IS ANDREW AND I NEED SERIOUS HELP. I HAVE FLATBACK SYNDROME

REALLY BAD. I AM FULLY BENT OVER AND I CANT BRING MY SPINE BACK. I

USE TO HAVE A SWAY BACK LORDOSIS BUT IT HAS BEEN REDUCED AND I CAN

NOT COMPENSATE AT ALL. IM REALLY SUFFERING FROM SEVERE DEPRESSION AND

NEED TO FIND A DOCTOR WHO CAN FIX ME. HAS ANYONE GOT FLATBACK

SYNDROME WHO USE TO HAVE HYPERLORDIS SWAYBACK AND HAS HAD REVISION

SURGERY?? IVE MADE APPOINTMENTS WITH 3 DOCTORS THIS MONTH DR LA GRONE

DR PASHMAN IN LA AND DR FARCY IN NYC. HAS ANYONE HAD EXPERIENCE WITH

THESE DOCTORS OR EVEN HAD REVISION SURGERY FROM OTHER DOCTORS WITH

EXTREMELY COMPLICATED FLATBACK??? GUYS IM REALLY SACRED AND GOING

CRAZY. PLEASE SUPPLY ME WITH S MUCH INFO AS POSSIBLE.

REGARDS ANDREW

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

August 5, 2005

Hi ...

Welcome, and good luck with your x-rays.

If you do have flatback, you might want to check out another

list:

/

Regards,

> Okay...I am a new member of this group. I had a Harrington Rod put in

> 1984 for scoliosis of course. It is now 21 years later, post 2 10lb

> babies. I am trying to get myself back into shape. I am in decent

> shape now except for my core stomach muscles. I have never had issues

> with my surgery until recently. I am going to have x-rays done to

> determine if I have flatback or am headed that way. Dr. Lowe in

> Colorado performed my original surgery. I read some research and it

> scared the heck out of me. My fusion is to L4. My pain is below my rod,

> and above my hips. Anyway, I have 2 little boys to keep up with and I

> don't want this pulling me down. Hope all is well with you other spine

> fighters!

>

August 10, 2005

Hi, --

You may well be a " Feisty Woman " already -- forgive me if I have my

s confused at the moment -- but if not, you may want to check out

an additional group for people with flatback syndrome,

We have

485 members at all stages of dealing with their actual or possible

flatback, and many of us can relate to your concerns.(I know

personally, for instance, how it feels to face the prospect of more

spinal surgery when you have young children at home.)

I hope you will visit us and see if you might find further information

and support, to augment the excellent resources available here at

Scoliosis Treatment. In any case, take care and keep us posted on your

situation.

Best,

> Okay...I am a new member of this group. I had a Harrington Rod put

in

> 1984 for scoliosis of course. It is now 21 years later, post 2 10lb

> babies. I am trying to get myself back into shape. I am in decent

> shape now except for my core stomach muscles. I have never had

issues

> with my surgery until recently. I am going to have x-rays done to

> determine if I have flatback or am headed that way. Dr. Lowe in

> Colorado performed my original surgery. I read some research and it

> scared the heck out of me. My fusion is to L4. My pain is below my

rod,

> and above my hips. Anyway, I have 2 little boys to keep up with and

I

> don't want this pulling me down. Hope all is well with you other

spine

> fighters!

>

August 10, 2005

Oops! Sorry, , I didn't see that you had already included the

url for Feisty yourself in a reply to .

I look forward to checking out the new info. at your website, re

post-op activity.

Best,

> > Okay...I am a new member of this group. I had a Harrington Rod

put in

> > 1984 for scoliosis of course. It is now 21 years later, post 2

10lb

> > babies. I am trying to get myself back into shape. I am in

decent

> > shape now except for my core stomach muscles. I have never had

issues

> > with my surgery until recently. I am going to have x-rays done

to

> > determine if I have flatback or am headed that way. Dr. Lowe in

> > Colorado performed my original surgery. I read some research and

it

> > scared the heck out of me. My fusion is to L4. My pain is below

my rod,

> > and above my hips. Anyway, I have 2 little boys to keep up with

and I

> > don't want this pulling me down. Hope all is well with you other

spine

> > fighters!

> >

February 18, 2006

I haven't been on the site for awhile, but just started looking

around again at all the postings. I live in California and several

people on this message board have recommended some very good surgeons

in San Francisco at the University of California, San Francisco. I

personally have not been to see them yet, but they are on my list

when my flatback gets so bad that I cannot function any more. They do

revision surgeries. They know about previous Harrington rod

surgeries. The best ones I have been told are Serena Hu and Sigurd

Berven. Might be a little farther away than Seattle (if Seattle has

any) but well worth the drive from Idaho. I was in Idaho last year on

the east side--Teton Valley--and it was beautiful with all those

beautiful Tetons. We went to Wyoming and saw Yellowstone and the

Grand Tetons. I also have relatives that live in north Idaho near

Coeur d'Alene. I have also been up there, too, but that was about 18

yrs. ago. We drove all the way to both of those places. Well worth

the drive. In a comfortable car my back doesn't bother me that much.

No more so than it does on a daily basis. I've been having pain for

about 20 yrs--had the original surgery about 32 yrs. ago. I had to

have facet injections this last spring to bring the pain back to

manageable levels, but most of the time it's tolerable. Just recently

found out that I had flatback. Never had heard of the term before.

Carol Vaughan

dcvaughan@...

> I am curious as to whom I have talked to on here still has

flatback. I

> havent been able to tell by the replies I have gotten. I get so

> confused on what to do the Dr.s that I saw in florida said the

surgery

> I need is far too dangerous and just see what I can do with PT I

did

> get back 3 inches through several months also us the ab lounge. I

am a

> little confused now that I am getting to the end of my crusade to

get

> this out

> ( you are having such great success) but than I remind my

> self that I have to have mine so high for any kind of relief that I

> really was terribly drugged for about five-six years. Mixxes my

appt

> with surgeon that is to take it out I had it on my calendar for 215

and

> they had me down for 11 so a 100 mile trip for nothing. Next week

he

> is back in this area or closer than boise anyway so will try again

I

> just hope I don't quit completely in that time. After 12 years of

> morphine there will be some reaction. HOPEFULLY MINAMAL

At .09100.

> ANYONE KNOW ANYTHING ABOUT THIS. I KNOW WHEN I HAD A ROTOR STALL

AFEW

> YEARS AGO IT WAS BAD AND THAN BEFORE MY LAST SURGERY IT QUIT

COMPLETELY

> AND I WAS IN THE HOSPEITAL ON A MORPHINE DRIP ALL WEEKEND. DON'T

> REMEMBER ANY OF THAT. If you know about any of these things I

would

> love to hear from. Thanks again, lynn

>

April 28, 2006

Lynn,

Flatback is a really confusing syndrome, even for those of us who have

a fairly straightforward (no pun intended) scoloisis history. If you

have the time and energy, I'd be interested in hearing more about your

history. At what year and at what age did you have your first

scoliosis surgery? What kind of instrumentation was used and what

levels of your spine were fused?

Same questions for additional surgery that you had.

I'm wondering if you had a flat back created during your first

scoliosis surgery that wasn't properly corrected with your next surgery.

I remember your mentioning that you think it was a mistake that you

were fused to S1. What was the rationale you were given prior to the

fusion to S1? Were your lower lumbar disks very degenerated or did

you develop a new curve in those lowest vertebrae?

What irked me greatly about my flatback syndrome progression (before I

had my hips replaced) is that I was not given adequate advice on the

importance of keeping the hip flexor muscles stretched out. Is this a

problem for you, too? For example, when you are lying on your back in

bed and try to straighten your legs so that the back of your knees hit

the bed, is it drastically impossible? The tight hip flexors combined

with my upper back curving to compensate for the too flat lumbar area

(created by the distraction Harrington Rod fusion) both contributed to

my leaning forward so much. Has anyone given you a measurement (in

degrees) of how much you lean forward?

I think Dr. LaGrone's website tries to make the point that several

factors can contribute to a flatback syndrome sufferer's sagital

imbalance. Some are: the unnatural flattening or improper amount of

lumbar area lordosis, increased kyphosis in the upper back area, and

hip flexion contractures. The severity of each of these factors may

be different in any particular person's case.

I don't know if this " laywoman " explanation will make any sense to

you, but if not, don't hesitate to keep asking questions until you

find someone who can explain it better than me. Take care and good

luck, Lynn!

loriann

>

> Hi, to anyone that might be able to answer this. Last night I

> visited Dr.LaGrones websight, I had never seen a xray picture like

> that before showing flatback. Even though the drs. have said mine

> is flatback it is nothing like that. From how that looks it is from

> the rods up amd I have gotten a slight curve there from being

> forward so much but mine is from the hips I go forward almost

> 90degrees. The only part that I can see that they call mine that is

> he fused me to s-1 and made my back so straight, I have no

> lordosis. Is this the way anyone else is? The surgery they present

> me with the wedge in a vertebra and all the other prpcedures just

> doesn't seem right. It will be interesting to see what the new drs.

> in Boise have to say next month. Goodnews!!!! I get my new pump

> next wednesday. The large volumn will only need refills every 4-6

> months, it is the syncromed (sp?) 2, told her I wanted the pda and

> she was going to call the rep and see if possible. I believe that

> is the one they said it worked with. Will start with dilaudid and

> baclofen, I have had dialaudid before but not baclofen in the pump.

> I am hoping I can wake up with out the horrible muscle spasms I now

> have.I have heard that baclofen works a lot better in the pump. A

> interesting fact when I had my pump replaced in Seatlle 12 years ago

> I had day surgery, I was at the hospital a total of 4-5 hours and I

> had a local anesthetic. It went really well. NOW I have to have a

> general anesthetic and stay over. I ask since I had to stay over

> could I have my mylegram the next day they have to call me back on

> that one. My guess is probably not. It has been an interesting

> journey from the time the pump quit and the pain level and amount of

> meds that really helped me. I am glad I was able to do it this way

> and find out what it was like after 14 year s with the pump and

> varying degrees and relieve. I havent been able to get the reloef

> from oral meds didn't experiment much but 10mgs oxycontin twice a

> day and norco for breakthrough pain isn't doing it. I am impressed

> with the lyrica though. have you been able to get your

> pump and pda back on track since it wasn't working right. Are you

> still as pleased with it? would be interested in knowing. More good

> news I get my Rascal scooter tomrrow after trying for two years I am

> really excited, it will give me so much more freedom. Didn't mean to

> write so much I hope somebody has some answers!! Best regards, Lynn

>

April 30, 2006

Lynn, I don't look like that picture on Dr. LaGrone's website,

either. I'm not that bent forward, but the diagram of the spine

farther down on the webpage is almost exactly what my spine looks

like!! It's bent forward above my fusion, and perfectly straight

below the top of the fusion. I'm sure that I had flatback right after

surgery now that I think of it, But I was ignorant of this whole

business until recently.....I had no clue.

Does anyone out there get terrible pain on the outside of their hip

after they walk a lot? (like the next day) And the pain refers to the

groin/pubic bone area? This is what I have every week now after I go

shopping Friday evening---the rest of the weekend trying to get rid

of the terrible pain on my rt. hip. My left lower back starts hurting

when I bend over, but rt. hip feels like it's " slipping " when I walk

and it hurts real bad. But it seems to be the muscles or ligaments,

not the hip joint. The only thing that helps is TWO ULTRAM every 6

hours. Is this a common problem/pain with flatback?? Does anyone

know????

Carol V. (CA)

>

> Hello to all of you or anyone who wants to read!!! I just reread

> all the post from the last few days and I think I have figured mine

> out..Several times I have made comments about what flatback is and

> do I have it, now I know,( within a years time went from 38degrees

> scoliosis to 78degrees). At that time I am 56 years old. I guess

> you can say in some repects that I am fortunate not to have gone

> through the horrible surgeries that you did as mere children. Just

> your remembrance of the pain from all those years ago is enough to

> make one shudder. Some one in one of the pain groups made some

> remark about not remembering pain, must have been a man. This

> certainly disputes that. Anyway what made me see the light is that

I

> have already had the revision surgery, Andy, you mentioned only

> bending from the hips, that's me. This is going to be lengthly if

> you think I will bore you skip by. It is interesting that

> a " DOCTOR " " neurosurgeon to top it off would know better but here

> goes. In July of 1992 I made a move from Seattle to the boonies of

> eastern Oregon. I already had a pain pump from earlier surgery

that

> after no other means helped with pain control. Ask my Seattle

Dr.

> to get me a referral. Was going to need refill in September so got

> an appt on August with new dr, referred through medtromics. In

> the first couple of months there, I was going in for adjustments

> sometimes twice a week( Boise 120 miles each way.) He suggested we

> try bupificaine, told him had done that in Seattle and awoke in the

> morning with totally numb legs, his respose was she used too much

we

> will use less, feeling desparate for an answer to pain I went for

> it. WITHIN TWENTYFOUR HOURS I HAD LOST ALL UPPER BODY STRENGTH, IT

> SEEMED ANYWHERE I HAD HAD A MUSCLE SPASM THEY WERE GONE AND

REPLACED

> BY PAIN. Went back in and he was determined that it was everything

> but the drug that had caused my pain. Sent me to an orthopedist to

> see if my new left sciaticic pain was from a tumor,bzck to Boise

the

> next day for that the ortho agreed that the drug could have caused

> my pain to change so drastically. But no tumor that is all he told

> the meuro=not the possibility that the drug could be the problem.

> They sent me to two more specialist endocronoligist and one other I

> don't even remember what he was I told my story to each and back to

> neuro's PA still won't listen to me to get the drug out, I am

> getting worse, can't even stand up straight without falling to the

> side. Very painfull and deforming. I believe it was in November I

> inisisted on seeing dr no more PA and I wasn't prepared for the

> reaction I was going to get from him for wanting a referral to

> someone else. (Workmans comp claim you can't even change drs

> without. Even begged my adjuster to make exception to this and was

> denied, they think you will dr hop until you find one that will say

> what you want to hear, no protection for the patient). He yelled

> how unappreciative I was to his care and being able to come to his

> beautiful office my insurance didn't pay him well enough he was

> doing it out of the goodness of his heart. Wow I sat there

> devastated couldn't even speak, I would have burst into tears

> ((looking back I wish I would have, how would he have dealt with

> that). Finally eeked out I was there for my refill(plain

> dilaudid)..He came back one more time to say he just couldn't

> understand how I could want to leave his practice.I had checked out

> others in the area not knowing anyone to ask, ended up with the

head

> of the largest rehab hospital in Idaho. Got over to them with a

> letter from last doc telling him that I had a habit of dr.

hopping.

> Made me explain cicumstances again. Still no real pain control only

> with him turning it up constantly, the pump. Watching me, in his

> words, list to the side, no ideas for any remedys, after at least a

> year, why we waited so long is beside me except I was being more

> drugged by the pump all the time. My husband traveled all the time

> and would come home and see me worse so finally he took me to an

> ortopedist he knew, after a full spine xray he was horrified we

went

> there at 330 and he would not let us leave until he had a appt for

> me the next day with a specialist, 730 in the evening. Next day

> with him, he advised the rods and screws and all the things you

guys

> are so familiar with. If I knew how, I would post these xrays.

> Can't believe it is me. Had the " revision " I say it that way

> because after the few months I have been coming here I just figured

> out the difference. Maybe because I no longer have a pump with

> drugs going through my body. That has been another awaking story.

> Later!! Finally got to the " R " surgery in July of 1999. Five

> surgeons did it 14 hours and than the surgeon ask my pain

management

> doctor to do Post surgery with the pump. I wasn't prepared for the

> surgery but much less for the after. He had my pump so high that

> the anestestiologist or surgeons did not have a clue as to what

they

> could do for my pain from hell, I begged my husband(does this fall

> under for better or worse), to do sonething finally the recovery

> room nurse suggested some wrap that had icewater pumping through

> it. That got me four more hours and than they felt I could handle

> the after surgery (normal) pain meds MORPHINE. No you can't quit

> reading yet that is not the end. If it were I probably won't be

> here today. After 6 weeks in rehab mostly packed in icebags having

> night mares, I wouldn't wish on my worst enemy, even this doctor,

> maybe a couple of my drs. not really, one time my last pain dr,

told

> the pa he wouldn't refill my pain meds three days early I wished

him

> five minutes of mine, He knew I didn't mean it though--but yes I

> did. I ask him about it later as that was only the sceond time in

> 8 years, he denied he even talked to him. I hope you don't think

my

> little pieses of attempting to be humorous are in bad taste, I

don't

> think I would have made it through this with out that and being an

> hopeless optimist...back to surgery--in september a screw pulled

out

> L3-4 one of those, back, literally, in for more. This time to S-1

> and flatback!!!! after a couple of months a lttle therapy the

> surgeon said he could do nothing more for me and referred me to his

> partner and teacher. He taught him and now I am suppose to let him

> practice more on me. No one else has wanted amything to do with

his

> mess, one surgeon in Florida said it was too dangerous to get

> involved in and surgery was way too dangerous. When fianlly I

found

> the " Feisty flatbackers " and renewed hope that I wouldn't be

looking

> at the ground the rest of my life. With that dangerous word now

> implanted and the other refusals, I think I am at the point that I

> would like to at least cousult DR. LaGrone.Atho in his bios he was

> at the same hospital as two of my others) I have a new pain

> mamagememt DR. She seems like a good one, although the thought

that

> they all were, especially when we put so much trust in them.

> Interesting note, my last Painmangment dr. got my claim closed

> because my claim was for my neck and he tolded her he had never

> treated me for my neck. The one positive for the pump was that it

> had my neck pain under control and it also had my sciatica under

> control, now oral meds are helping neither , the reason that on

> wednesday I am having a new one put in with very low meds. He had

> been informed of the neck problems but she commented no testing,

> mris and etc. I was not going to consider that with all the

> devastating things going on with the rest of my body. Well, fellow

> flatbackers I guess it doesnn't matter how we got there it is great

> that we are here for each other. Thanks a million and I hope I

> cleared up all the questions. Best regards, Lynn (I hope a

> few of you read this two hours plus, bad typist and even worse at

> editting!!!

>

April 30, 2006

Dear Lynn,

I am so sorry for all that you have been through.

Dr. Lagrone was formerly with the University of Washington in

Seattle. He has been back in his home town of Amarillo, TX for some

years now.

I am not sure from your story that you actually have flatback

syndrome. It sounds as if you had an initial, long fusion for

scoliosis. Scoliosis is the " sideways " curvature that you write

about. If the operation you had was your first one, it was an

initial spinal fusion -- not a revision. I am not sure when you had

this surgery, but if you had it after about 1986, you probably did

not have a Harrington rod installed, and you are at little or no

risk of flatback syndrome.

I am sure there are very good reasons for your severe pain and

suffering. I hope that you can get some answers from Dr. Lagrone or

an equally qualified specialist. You need a definitive diagnosis,

that's for sure. Just please don't jump to the conclusion that you

have flatback syndrome for sure -- that may be one less thing you

have to worry about after all you have been through.

Best,

>

> Hello to all of you or anyone who wants to read!!! I just reread

> all the post from the last few days and I think I have figured

mine

> out..Several times I have made comments about what flatback is and

> do I have it, now I know,( within a years time went from 38degrees

> scoliosis to 78degrees). At that time I am 56 years old. I guess

> you can say in some repects that I am fortunate not to have gone

> through the horrible surgeries that you did as mere children.

Just

> your remembrance of the pain from all those years ago is enough to

> make one shudder. Some one in one of the pain groups made some

> remark about not remembering pain, must have been a man. This

> certainly disputes that. Anyway what made me see the light is that

I

> have already had the revision surgery, Andy, you mentioned only

> bending from the hips, that's me. This is going to be lengthly if

> you think I will bore you skip by. It is interesting that

> a " DOCTOR " " neurosurgeon to top it off would know better but here

> goes. In July of 1992 I made a move from Seattle to the boonies

of

> eastern Oregon. I already had a pain pump from earlier surgery

that

> after no other means helped with pain control. Ask my Seattle

Dr.

> to get me a referral. Was going to need refill in September so

got

> an appt on August with new dr, referred through medtromics. In

> the first couple of months there, I was going in for adjustments

> sometimes twice a week( Boise 120 miles each way.) He suggested

we

> try bupificaine, told him had done that in Seattle and awoke in

the

> morning with totally numb legs, his respose was she used too much

we

> will use less, feeling desparate for an answer to pain I went for

> it. WITHIN TWENTYFOUR HOURS I HAD LOST ALL UPPER BODY STRENGTH,

IT

> SEEMED ANYWHERE I HAD HAD A MUSCLE SPASM THEY WERE GONE AND

REPLACED

> BY PAIN. Went back in and he was determined that it was

everything

> but the drug that had caused my pain. Sent me to an orthopedist

to

> see if my new left sciaticic pain was from a tumor,bzck to Boise

the

> next day for that the ortho agreed that the drug could have

caused

> my pain to change so drastically. But no tumor that is all he

told

> the meuro=not the possibility that the drug could be the problem.

> They sent me to two more specialist endocronoligist and one other

I

> don't even remember what he was I told my story to each and back

to

> neuro's PA still won't listen to me to get the drug out, I am

> getting worse, can't even stand up straight without falling to the

> side. Very painfull and deforming. I believe it was in November

I

> inisisted on seeing dr no more PA and I wasn't prepared for the

> reaction I was going to get from him for wanting a referral to

> someone else. (Workmans comp claim you can't even change drs

> without. Even begged my adjuster to make exception to this and

was

> denied, they think you will dr hop until you find one that will

say

> what you want to hear, no protection for the patient). He yelled

> how unappreciative I was to his care and being able to come to his

> beautiful office my insurance didn't pay him well enough he was

> doing it out of the goodness of his heart. Wow I sat there

> devastated couldn't even speak, I would have burst into tears

> ((looking back I wish I would have, how would he have dealt with

> that). Finally eeked out I was there for my refill(plain

> dilaudid)..He came back one more time to say he just couldn't

> understand how I could want to leave his practice.I had checked

out

> others in the area not knowing anyone to ask, ended up with the

head

> of the largest rehab hospital in Idaho. Got over to them with a

> letter from last doc telling him that I had a habit of dr.

hopping.

> Made me explain cicumstances again. Still no real pain control

only

> with him turning it up constantly, the pump. Watching me, in his

> words, list to the side, no ideas for any remedys, after at least

a

> year, why we waited so long is beside me except I was being more

> drugged by the pump all the time. My husband traveled all the

time

> and would come home and see me worse so finally he took me to an

> ortopedist he knew, after a full spine xray he was horrified we

went

> there at 330 and he would not let us leave until he had a appt for

> me the next day with a specialist, 730 in the evening. Next day

> with him, he advised the rods and screws and all the things you

guys

> are so familiar with. If I knew how, I would post these xrays.

> Can't believe it is me. Had the " revision " I say it that way

> because after the few months I have been coming here I just

figured

> out the difference. Maybe because I no longer have a pump with

> drugs going through my body. That has been another awaking story.

> Later!! Finally got to the " R " surgery in July of 1999. Five

> surgeons did it 14 hours and than the surgeon ask my pain

management

> doctor to do Post surgery with the pump. I wasn't prepared for

the

> surgery but much less for the after. He had my pump so high that

> the anestestiologist or surgeons did not have a clue as to what

they

> could do for my pain from hell, I begged my husband(does this fall

> under for better or worse), to do sonething finally the recovery

> room nurse suggested some wrap that had icewater pumping through

> it. That got me four more hours and than they felt I could handle

> the after surgery (normal) pain meds MORPHINE. No you can't quit

> reading yet that is not the end. If it were I probably won't be

> here today. After 6 weeks in rehab mostly packed in icebags

having

> night mares, I wouldn't wish on my worst enemy, even this doctor,

> maybe a couple of my drs. not really, one time my last pain dr,

told

> the pa he wouldn't refill my pain meds three days early I wished

him

> five minutes of mine, He knew I didn't mean it though--but yes I

> did. I ask him about it later as that was only the sceond time

in

> 8 years, he denied he even talked to him. I hope you don't think

my

> little pieses of attempting to be humorous are in bad taste, I

don't

> think I would have made it through this with out that and being an

> hopeless optimist...back to surgery--in september a screw pulled

out

> L3-4 one of those, back, literally, in for more. This time to S-

1

> and flatback!!!! after a couple of months a lttle therapy the

> surgeon said he could do nothing more for me and referred me to

his

> partner and teacher. He taught him and now I am suppose to let