Harrington Rod & Flatback Syndrome Info. wanted

[Guest guest]

If you have had or still have a Harrington Rod I am interested in

contacting you. I am trying to set up a non-profit foundation for Flatback

Syndrome. Please email me with your email address and The State & country you

live in also if you have Flatback and if you still have the Harrington Rod

implanted in your poor spine! Thanks..I need quantitative data in order to get

medical professionals interested in participating in a foundation that can offer

support specifically for folks who have or had a Harrington Rod. Did you know

that even if you had your Harrington Rod removed years ago that you can still

develop Flatback Syndrome as the Rod force on the spine may have already set

Flatback into motion and it normally takes numerous years for it to develop.

Each of us is unique. I had my Harrington Rod fusion T10-L4 at age 16. I had the

salvage surgery known as Revision Surgery for Flatback Syndrome at age 32. I am

now age 36. I am trying to get Flatback Syndrome public & medical awareness.

Often the orthopedic doctor is unaware of the Harrington Rod complication of

Flatback Syndrome and dismisses the original fusion & rod as the culprit;

because often on x-ray everything looks still intact! Or the doctors who realize

there is a problem & surgically treats the symptoms but doesn't correct the true

cause of the pain. For example they may do discectomy for a bulging disc in pain

but do not realize the rod is causing progressive degenerative changes to the

ENTIRE BODY! So I hope you can help me by sharing just those few bits of

information (see my format below) that can help give validity to the numbers of

people affected by the Harrington Rod surgery. Please submit your information to

my email address in the below format. You may add more information if you would

like at the end and contact me if you have any questions or any ideas!..I am

counting on everyone to help get public awareness so no one need be alone,

desperate or hopeless. Thank you!

Kathleen Kulina Wigham

format below (Nickname or real name acceptable):

Twisted Sister in New Jersey USA

email: kulina@...

Age 16 Harrington Rod fusion posterior T10-L4 , Alfred I DuPont Institute

Wilmington, DE , May 1982

Age 32 Flatback Revision L4-S1 anterior/posterior , Hopkins,

Baltimore, MD , October 1998

Age 34 Posterior Rods/Screws Removed, Hospital for Joint Diseases,

Manhattan, NYC September 2000

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

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

" Harrington Rod people and other post-op multiple spine surgery people may be

interested in the following website dedicated to Flatback Syndrome and multiple

spine surgery cases: " Salvaged Sisters of Scoliosis " website

http://forums.delphiforums.com/adultscoliosis/messages

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

" Harrington Rod people and other post-op multiple spine surgery people may be

interested in the following website dedicated to flatback syndrome and

multiple spine surgery cases: " Salvaged Sisters of Scoliosis " website

http://forums.delphiforums.com/adultscoliosis/messages

[Guest guest]

Deemoma@...

Age 13 Harrington Rod fusion posterior thru L-3, KU Medical Center, Kansas

City, KS, June 1974,

Discectomy & Laminacotomy, KU Medical Center, Kansas City, KS Sept 2002

My doctor has explained to me that yes the discs in the unfused portion of

the back do take on an extra load as a result of the Harrington Rods. In my

case however those rods have enabled me to have a healthy life. My curve was

70 degree at the time of surgery was affecting my breathing etc.. left

unattended I might not be here today. I feel very fortunate that I have not

had any trouble for 29 years and only recently have had trouble with my back.

However since my surgery last week I am feeling wonderful--like a breathe of

new life has been put back into me and am pain free. My doctor did tell me I

would have back pain at times-however he also told me the more I can exercise

to help strenghten the muscles in my back the better off I will be. I truly

feel for those who have such horrible pain-I felt that way for 9 months and I

know their frustration. I hope this group that you are starting will help

give answers for many who need it.

[Guest guest]

Harrington Rod Shriner's in Springfield, MA age 13; hooks only removed age 14; degenerative disc disease, Oklahoma City age 34, flat back diagnosed age 43, Oklahoma City, last surgery revised with osteotomies and partial rod removal age 43, unsuccessful and still looking for more help in Oklahoma City, age 44.

[Guest guest]

Hello, Donna

I feel like I'm reading my own history! I too had my fusion at age

13, at Shriner's in Springfield, and am now 44 with flatback. I

don't remember for sure if I met a Donna there. I was there from

late October 'til just before Christmas '71, then back to get

my " walking Risser " around the end of March. I bet we met a lot of

the same people, though.

Remember what a zoo that place was? Everybody had their radios tuned

to TXL when the tv or phonograph wasn't going. (Maggie May, the

Partridge Family) Oh, you must have known MRS. HARRINGTON! She used

to hum while she clicked her dentures, and she always said " You're

all set. " Hey, we must have worn the same dresses. Remember the

rack of dorky dresses, the stretcher rides to " school " , the daily

rounds, the nightly BM calls, LOL! Dr. DeWeese was pretty nice, even

if he did do some of the cutting and sawing.

On a more serious note, I'm sorry you've had such a rough time of it

and that your revision didn't go well. I'm still wondering whether I

need to go that route, and reluctantly feeling I probably will

eventually. I hope you manage to get the help you need.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> Harrington Rod Shriner's in Springfield, MA age 13; hooks only

removed age

> 14; degenerative disc disease, Oklahoma City age 34, flat back

diagnosed age

> 43, Oklahoma City, last surgery revised with osteotomies and

partial rod

> removal age 43, unsuccessful and still looking for more help in

Oklahoma

> City, age 44.

[Guest guest]

Sharon,

What a small world! We may have been at Shriners at the same time. I was in there in October, although I don't remember just exactly when I went home. I was thrilled to hear from another Shriner's patient. And it's so funny that we have a lot of the same memories! I 've told my husband all of the same stories like about Mrs. Harrington's dentures, BM role calls and those same songs that kids played over and over on the phonograph. But, I had forgotten about the dresses. I also remember a nurse I really liked. I think her name was Ms. Savoie. She was always really nice.

I have a second opinion with another surgeon on October 3rd. I'm anxious to hear what he has to say. Of course, I wouldn't have been in as bad a shape if I hadn't had the surgery of eleven years ago. Unfortunately, I didn't choose the right surgeon back then. What he did made things worse for me. Nowadays there's a lot more access to helpful information. Thank God!

I'm trying not to get too discouraged and I am still hopeful that I'll have a more active life again some day. Anyway, I wish the best for you and thanks for sharing my memories! Donna

[Guest guest]

Donna,

I know your second opinion is coming up fast now. I hope you get

some helpful information on October 3rd.

The insurance conundrum can be such a pain. I remember after my

second fusion, the nurse-practitioner cautioned me " Don't ever lose

your group insurance, because no one else will ever cover you after

what you've been through with your back! " And now I've had two more

fusions . . .

Your and Sharon's stories brought back some incredibly painful

memories for me. I had my initial surgery at Walter Army Medical

Center in Washington, DC, at age 13. But before that I was

hospitalized several times at another facility which shall remain

nameless (not a Shriner's hospital), where I was encased in my

earliest Risser jackets. And yes, I, too, was issued dorky dresses to

wear -- worn and faded hand-me-downs from charitable donors. I was a

hypersensitive kid to begin with, and to me this was one of many

unconscionable humiliations. Sadly, and perhaps realistically, I

guess the thinking was that many of the " crippled children " in this

hospital had no parents still in their lives to clothe them. Many of

them basically lived in the hospital.

The children had every kind of orthopedic deformity and disability.

They were all heart-rending, the infants especially so. In a huge,

open ward full of children of all ages, there was almost no privacy,

and definitely no call button -- you had to yell repeatedly, over the

general clamor, for an LPN, who might or might not ever arrive.The

nursing staff was, on the whole, uneducated and sometimes callous and

inept. One nursing assistant, who may have been retarded, brought me

a bedpan then parked her hand on my pubic area till I yelled at her

to get her hand off me.

The staff had demeaning procedures for sending long lines of

sensitive prepubertal and adolescent kids onto a stage to be

subjected to an auditorium full of Grand Rounds attendees

The food at that hospital could not even be called marginal--it was

revolting. The beds all had boards for mattresses. Each night in that

place seemed unending.

Long before my military family made alternate arrangements for me --

Walter was temporarily unavailable, we were told initially,

because of renovations being made in the O.R. -- but well after it

seemed clear that spinal fusion was the only realistic treatment

option for me, I refused to undergo such surgery at the children's

hospital. The facility has since become (I can only hope) a relic of

more barbaric times in the annals of pediatric care. But I still get

chills remembering that place.

And here's an even more chilling thought. I was a patient at that

facility in 1962, and it was located in the Southern U.S. It

accepted for care all " crippled children " in the state or the region.

Provided, that is, that the children were white.

And the children who were not . . . who had birth defects, or damage

from poliomyelitis, or idiopathic scoliosis like me, but whose skin

was a different color from mine . . . where did those children go

for casts or for surgery? Who cared for those children, I

wonder. . . .

Eliana

> Sharon,

> What a small world! We may have been at Shriners at the same time.

I was in

> there in October, although I don't remember just exactly when I

went home. I

> was thrilled to hear from another Shriner's patient. And it's so

funny that

> we have a lot of the same memories! I 've told my husband all of

the same

> stories like about Mrs. Harrington's dentures, BM role calls and

those same

> songs that kids played over and over on the phonograph. But, I had

forgotten

> about the dresses. I also remember a nurse I really liked. I think

her name

> was Ms. Savoie. She was always really nice.

> I have a second opinion with another surgeon on October 3rd. I'm

anxious to

> hear what he has to say. Of course, I wouldn't have been in as bad

a shape

> if I hadn't had the surgery of eleven years ago. Unfortunately, I

didn't

> choose the right surgeon back then. What he did made things worse

for me.

> Nowadays there's a lot more access to helpful information. Thank

God!

> I'm trying not to get too discouraged and I am still hopeful that

I'll have

> a more active life again some day. Anyway, I wish the best for you

and

> thanks for sharing my memories! Donna

[Guest guest]

Wow, , I certainly didn't mean to dredge up painful

memories. While there are certainly memories from Shriner's that I'd

prefer to forget, I never thought of it as a bad hospital, as far as

hospitals of that day went. I figured the dress policy was an effort

to make us feel LESS institutionalized; it would have been much

easier for the staff to just leave us in johnnies all day and night,

as they did at other hospitals I'd been in. I figured it was sort of

like school uniforms. Everyone wore the same hand-me-downs; the

hospital didn't have to be responsible for the care of personal

clothing (which surely would have been a logistical nightmare), and

no class distinctions could be made based on clothing. Every bed was

well-covered with hand-made patchwork quilts that some very kind

ladies no doubt spent many hours making for us. The beds were quite

firm, something I missed terribly when I got home and sank into the

bed there. My dad went right out and bought a board to put under the

mattress, to make it support me as well as the hospital beds had.

There wasn't much privacy, like going to camp, but there also wasn't

much opportunity to feel lonely as there was an " all in the same

boat " comeraderie, and friendships were formed. I really felt the

administration made every effort to keep things light-hearted and the

children pleasantly occupied. There was always something happening,

school, OT, Girl Scouts, Shriner's clowns, Thanksgiving dinner (a

surgeon cut the turkey!), Christmas carollers. I really lucked out

by being there when the Shriners showered us with Christmas gifts,

then going home on Christmas Eve. There were a couple of black girls

on the ward, including an adorable little Nigerian named Winnifred.

I loved her accent. There certainly were some heart-breaking

deformities there, but most of what I saw were beautifully brave

children with big smiles. I remember some of the littler girls

climbing on Dr. DeWeese and arguing over who was Dr. DeWeese's

girlfriend. He settled it by answering the question " Who's your

girlfriend? " with " Mrs. DeWeese " . The girls thought that was pretty

funny. It is sad to think that other hospitals, such as the one you

were in, were not as considerate of the patients.

Donna, I too am tickled to find a Shriner's alum here. After reading

your message I couldn't get " The Night They Drove Old Dixie Down " out

of my head; even some of the smells came back to me. Funny the

things we remember. I have my hospital records, so I know that I was

admitted October 25th. I started my stay there pretty shy and

withdrawn, so if you were there we may not have really gotten

acquainted. I do remember Ms. Savoie, though the face escapes me. I

also liked Ms. Dolan and Ms. Tiece (sp?) Remember the " Rockettes " ?

The exercises we Risser girls had to do to keep the leg muscles

limber, so named because they made us look like we were dancing the

Can-can? You probably missed the time the therapist tied bows on all

our ankles and had us perform for the doctors during rounds. A bit

undignified, surely, but all in good fun.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> > Sharon,

> > What a small world! We may have been at Shriners at the same

time.

> I was in

> > there in October, although I don't remember just exactly when I

> went home. I

> > was thrilled to hear from another Shriner's patient. And it's so

> funny that

> > we have a lot of the same memories! I 've told my husband all of

> the same

> > stories like about Mrs. Harrington's dentures, BM role calls and

> those same

> > songs that kids played over and over on the phonograph. But, I

had

> forgotten

> > about the dresses. I also remember a nurse I really liked. I

think

> her name

> > was Ms. Savoie. She was always really nice.

> > I have a second opinion with another surgeon on October 3rd. I'm

> anxious to

> > hear what he has to say. Of course, I wouldn't have been in as

bad

> a shape

> > if I hadn't had the surgery of eleven years ago. Unfortunately, I

> didn't

> > choose the right surgeon back then. What he did made things worse

> for me.

> > Nowadays there's a lot more access to helpful information. Thank

> God!

> > I'm trying not to get too discouraged and I am still hopeful that

> I'll have

> > a more active life again some day. Anyway, I wish the best for

you

> and

> > thanks for sharing my memories! Donna

[Guest guest]

Sharon,

I've certainly never heard anything but glowing praise of Shriners

hospitals. I'm glad to hear that your experience, too, was

overwhelmingly positive.

Let me emphasize again that the hospital I wrote about had nothing to

do with Shriners. Also, at that time, in the region where the

hospital was located, segregation was simply the " norm, " at least

outside federal facilities. Thank God this all began to change

shortly afterwards.

It also occurred to me that someone might regard my post

as " blaming " -- and if this is the case, I do apologize. I actually

felt it was good for me to resurrect (at least briefly) a few unhappy

recollections. Like some other girls with scoliosis, I was an ace at

superniceness, suppression of negative emotions, and hyper-

achievement-activity (or what Mina has dubbed Scoliosis

Overcompensation Syndrome). In some ways, I suppose, I still am. Once

in a while, though, it's good to bawl or let down my hair a little,

and I felt much better for having done so. I have you and Donna to

thank for this, so -- thanks.

Eliana

> > > Sharon,

> > > What a small world! We may have been at Shriners at the same

> time.

> > I was in

> > > there in October, although I don't remember just exactly when I

> > went home. I

> > > was thrilled to hear from another Shriner's patient. And it's

so

> > funny that

> > > we have a lot of the same memories! I 've told my husband all

of

> > the same

> > > stories like about Mrs. Harrington's dentures, BM role calls

and

> > those same

> > > songs that kids played over and over on the phonograph. But, I

> had

> > forgotten

> > > about the dresses. I also remember a nurse I really liked. I

> think

> > her name

> > > was Ms. Savoie. She was always really nice.

> > > I have a second opinion with another surgeon on October 3rd.

I'm

> > anxious to

> > > hear what he has to say. Of course, I wouldn't have been in as

> bad

> > a shape

> > > if I hadn't had the surgery of eleven years ago. Unfortunately,

I

> > didn't

> > > choose the right surgeon back then. What he did made things

worse

> > for me.

> > > Nowadays there's a lot more access to helpful information.

Thank

> > God!

> > > I'm trying not to get too discouraged and I am still hopeful

that

> > I'll have

> > > a more active life again some day. Anyway, I wish the best for

> you

> > and

> > > thanks for sharing my memories! Donna

[Guest guest]

I'd never go as far as to say my experience of being stretched on a

rack, stuck with needles, and carved like a turkey was overwhelmingly

positive! There was plenty of pain involved. Once I was wakened in

recovery by a nurse yelling " Sharon, stop crying! " I was crying in

my sleep, the idiot! I did, however, feel in general that there was

plenty of effort to make the experience less traumatic.

Yes, we all need to vent sometimes, even if it does sound like

blaming. I hear you about the scoliosis syndrome stuff, too. When I

was confined to bed at home I had all sorts of plans for the

incredible things I was going to do when I stopped being an invalid.

Be super-nice, don't complain; appeasing those with power over us was

a necessary survival skill.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> > > > Sharon,

> > > > What a small world! We may have been at Shriners at the same

> > time.

> > > I was in

> > > > there in October, although I don't remember just exactly when

I

> > > went home. I

> > > > was thrilled to hear from another Shriner's patient. And it's

> so

> > > funny that

> > > > we have a lot of the same memories! I 've told my husband all

> of

> > > the same

> > > > stories like about Mrs. Harrington's dentures, BM role calls

> and

> > > those same

> > > > songs that kids played over and over on the phonograph. But,

I

> > had

> > > forgotten

> > > > about the dresses. I also remember a nurse I really liked. I

> > think

> > > her name

> > > > was Ms. Savoie. She was always really nice.

> > > > I have a second opinion with another surgeon on October 3rd.

> I'm

> > > anxious to

> > > > hear what he has to say. Of course, I wouldn't have been in

as

> > bad

> > > a shape

> > > > if I hadn't had the surgery of eleven years ago.

Unfortunately,

> I

> > > didn't

> > > > choose the right surgeon back then. What he did made things

> worse

> > > for me.

> > > > Nowadays there's a lot more access to helpful information.

> Thank

> > > God!

> > > > I'm trying not to get too discouraged and I am still hopeful

> that

> > > I'll have

> > > > a more active life again some day. Anyway, I wish the best

for

> > you

> > > and

> > > > thanks for sharing my memories! Donna

[Guest guest]

I went for my second opinion yesterday. This surgeon has only been in practice for five years. He said if I had gone to him first he would have sent me to Minneapolis where he trained. With his singular practice he said he was not equipped to handle a case such as mine. He told me what he would suggest doing to "fix" my problem which was slightly different than the Dr. who has been treating me so far. He told me that he is well acquainted with Dr. and believes he has the training and experience necessary to help me. He said he would call him and discuss my case with him. I'm hoping Dr. can put aside his ego for a minute and at least listen. I have an appointment with him next week and I'm thinking it ought to be an interesting one to say the least. I guess I feel a little better as far as having confidence in my him now. He has not been very understanding with all the emotional aspects of my care. When things started going downhill for me I think it was probably an assault on his ego and his dealings with me were full of sarcasm and frankly, rudeness. Any time I question him he seems to be on the defense. Of course, I have been so emotional that I bawl during and after every visit and it has become a traumatic experience for me.

As far as Shriner's goes, there were difficult and painful experiences. But, thankfully, I tend to remember the good things such as the caring staff and the visits from the Shriner's dressed up as clowns, etc. I am so grateful for the treatment they gave me. Unfortunately no one knew what the result would be years down the road. I don't hold them responsible at all. Technology changes! They did the best they could at the time.

I remember Winnie, also. I guess it was the kids like her, so far from home and the other severely deformed or crippled children that made me feel blessed. I also realize the effects this had on me which helping me to develop a strong stoicism. I guess we probably all have that in common. I remember thinking that I wasn't anything like the other children like beautiful, blond who was an amputee or Marnann(?) who had Cerebral Palsy as well as scoliosis or others who had Muscular Dystrophy, etc. Believe it or not, it has only been in the last 3 months or so that I have allowed myself to realize that scoliosis can be a crippling affliction. I guess that probably sounds dumb. I guess I never let it slow me down until last year. I remember years ago when I was still doing well I went to buy my first microwave oven. I was single at the time and I figured I could carry it in from my car. Well I did and needless to say a few days later my back was hurting enough to go to the doctor. So, I looked up an orthopedist and went to see him. When I told him what I had done he actually yelled at me and told me I could have broken the rod. I had no idea. Dr. Deweese told me I could do anything I wanted except sky diving and I guess I took him literally. After a Medrol dosepak I was back to "normal" and went on for about ten more years without incident.

I guess I needed to get all this off my chest. I appreciate this safe place to do this. Thank you all for "listening". Donna

[Guest guest]

Donna, it sounds like your consultation yesterday was at least

partially encouraging. Perhaps Dr. will listen to the younger

surgeon. The docs back in '71 sure were rosy about our prospects,

weren't they? I too believed I was fixed for life. As much as I

prefer adulthood, I have a bit of nostalgia for the old days when my

parents would mediate between me and the doctors. Not that I didn't

give them a piece of my mind on occasion!

Didn't it always seem strange to be sent to a hospital for " crippled "

children? I thought they should have called it the Shriner's

Orthopedic Hospital for Children, or some such thing. They have

dropped the epithet, " crippled " , thank heaven. I also got sent to a

camp for crippled children. It was a bit of a relief to discover I

wasn't the only scoli kid there, but I never mentioned it to anyone

at school until I worked my way into a staff position. As a

counsellor I did all the grunt work the others did; they taught us to

move kids without straining our backs and the worst I ever felt was a

slight pull in the back of the right shoulder. Those were the days.

I never tried to lift a microwave by myself, though.

I too remember Marnann, but I don't think I met . A girl with

muscular dystrophy had the greatest smile. The doctors (or was it

just DeWeese?) loved to roll her name off their tongues. Beth

Uricchio. I imagine she's long gone. I remember a sweet little m.

dyst. girl at camp sobbing when she learned for the first time that

her disease would eventually kill her. There are worse things than

scoliosis.

But it can cripple us, something I too am just coming to terms with.

I guess it's just as well I didn't know at the time that the fusion

would be a partial or temporary fix. It may have saved my life,

something all Beth's surgeries couldn't do. It also bought me a

few pain-free, active years, and that's something I too am quite

thankful for.

Best of luck dealing with those doctors. Thanks for keeping us

posted.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> I went for my second opinion yesterday. This surgeon has only been

in

> practice for five years. He said if I had gone to him first he

would have

> sent me to Minneapolis where he trained. With his singular practice

he said

> he was not equipped to handle a case such as mine. He told me what

he would

> suggest doing to " fix " my problem which was slightly different than

the Dr.

> who has been treating me so far. He told me that he is well

> acquainted with Dr. and believes he has the training and

experience

> necessary to help me. He said he would call him and discuss my case

with

> him. I'm hoping Dr. can put aside his ego for a minute and

at least

> listen. I have an appointment with him next week and I'm thinking

it ought

> to be an interesting one to say the least. I guess I feel a little

better as

> far as having confidence in my him now. He has not been very

understanding

> with all the emotional aspects of my care. When things started going

> downhill for me I think it was probably an assault on his ego and

his

> dealings with me were full of sarcasm and frankly, rudeness. Any

time I

> question him he seems to be on the defense. Of course, I have been

so

> emotional that I bawl during and after every visit and it has

become a

> traumatic experience for me.

> As far as Shriner's goes, there were difficult and painful

experiences. But,

> thankfully, I tend to remember the good things such as the caring

staff and

> the visits from the Shriner's dressed up as clowns, etc. I am so

grateful

> for the treatment they gave me. Unfortunately no one knew what the

result

> would be years down the road. I don't hold them responsible at all.

> Technology changes! They did the best they could at the time.

> I remember Winnie, also. I guess it was the kids like her, so far

from home

> and the other severely deformed or crippled children that made me

feel

> blessed. I also realize the effects this had on me which helping me

to

> develop a strong stoicism. I guess we probably all have that in

common. I

> remember thinking that I wasn't anything like the other children

like

> beautiful, blond who was an amputee or Marnann(?) who had

Cerebral

> Palsy as well as scoliosis or others who had Muscular Dystrophy,

etc.

> Believe it or not, it has only been in the last 3 months or so that

I have

> allowed myself to realize that scoliosis can be a crippling

affliction. I

> guess that probably sounds dumb. I guess I never let it slow me

down until

> last year. I remember years ago when I was still doing well I went

to buy my

> first microwave oven. I was single at the time and I figured I

could carry

> it in from my car. Well I did and needless to say a few days later

my back

> was hurting enough to go to the doctor. So, I looked up an

orthopedist and

> went to see him. When I told him what I had done he actually yelled

at me

> and told me I could have broken the rod. I had no idea. Dr. Deweese

told me

> I could do anything I wanted except sky diving and I guess I took

him

> literally. After a Medrol dosepak I was back to " normal " and went

on for

> about ten more years without incident.

> I guess I needed to get all this off my chest. I appreciate this

safe place

> to do this. Thank you all for " listening " . Donna

[Guest guest]

It is also good to hear other people's stories. We have so much in

common. I am really grateful to you for sharing some of your

experiences and observations -- thanks.

Eliana

> I went for my second opinion yesterday. This surgeon has only been

in

> practice for five years. He said if I had gone to him first he

would have

> sent me to Minneapolis where he trained. With his singular practice

he said

> he was not equipped to handle a case such as mine. He told me what

he would

> suggest doing to " fix " my problem which was slightly different than

the Dr.

> who has been treating me so far. He told me that he is well

> acquainted with Dr. and believes he has the training and

experience

> necessary to help me. He said he would call him and discuss my case

with

> him. I'm hoping Dr. can put aside his ego for a minute and

at least

> listen. I have an appointment with him next week and I'm thinking

it ought

> to be an interesting one to say the least. I guess I feel a little

better as

> far as having confidence in my him now. He has not been very

understanding

> with all the emotional aspects of my care. When things started going

> downhill for me I think it was probably an assault on his ego and

his

> dealings with me were full of sarcasm and frankly, rudeness. Any

time I

> question him he seems to be on the defense. Of course, I have been

so

> emotional that I bawl during and after every visit and it has

become a

> traumatic experience for me.

> As far as Shriner's goes, there were difficult and painful

experiences. But,

> thankfully, I tend to remember the good things such as the caring

staff and

> the visits from the Shriner's dressed up as clowns, etc. I am so

grateful

> for the treatment they gave me. Unfortunately no one knew what the

result

> would be years down the road. I don't hold them responsible at all.

> Technology changes! They did the best they could at the time.

> I remember Winnie, also. I guess it was the kids like her, so far

from home

> and the other severely deformed or crippled children that made me

feel

> blessed. I also realize the effects this had on me which helping me

to

> develop a strong stoicism. I guess we probably all have that in

common. I

> remember thinking that I wasn't anything like the other children

like

> beautiful, blond who was an amputee or Marnann(?) who had

Cerebral

> Palsy as well as scoliosis or others who had Muscular Dystrophy,

etc.

> Believe it or not, it has only been in the last 3 months or so that

I have

> allowed myself to realize that scoliosis can be a crippling

affliction. I

> guess that probably sounds dumb. I guess I never let it slow me

down until

> last year. I remember years ago when I was still doing well I went

to buy my

> first microwave oven. I was single at the time and I figured I

could carry

> it in from my car. Well I did and needless to say a few days later

my back

> was hurting enough to go to the doctor. So, I looked up an

orthopedist and

> went to see him. When I told him what I had done he actually yelled

at me

> and told me I could have broken the rod. I had no idea. Dr. Deweese

told me

> I could do anything I wanted except sky diving and I guess I took

him

> literally. After a Medrol dosepak I was back to " normal " and went

on for

> about ten more years without incident.

> I guess I needed to get all this off my chest. I appreciate this

safe place

> to do this. Thank you all for " listening " . Donna

[Guest guest]

Thank you, too, Sharon, for these recollections and observations.

You and Donna have not merely gotten me teary-eyed today, but have

reminded me of something I read years ago in a book called Centering

in Pottery, Poetry, and the Person by C. Daley. Forgive the

imprecise quote from memory:

" It is from our wounds that our compassion flows . . . . We must open

our wounds, and let them weep afresh. "

Eliana

> > I went for my second opinion yesterday. This surgeon has only

been

> in

> > practice for five years. He said if I had gone to him first he

> would have

> > sent me to Minneapolis where he trained. With his singular

practice

> he said

> > he was not equipped to handle a case such as mine. He told me

what

> he would

> > suggest doing to " fix " my problem which was slightly different

than

> the Dr.

> > who has been treating me so far. He told me that he is well

> > acquainted with Dr. and believes he has the training and

> experience

> > necessary to help me. He said he would call him and discuss my

case

> with

> > him. I'm hoping Dr. can put aside his ego for a minute and

> at least

> > listen. I have an appointment with him next week and I'm thinking

> it ought

> > to be an interesting one to say the least. I guess I feel a

little

> better as

> > far as having confidence in my him now. He has not been very

> understanding

> > with all the emotional aspects of my care. When things started

going

> > downhill for me I think it was probably an assault on his ego and

> his

> > dealings with me were full of sarcasm and frankly, rudeness. Any

> time I

> > question him he seems to be on the defense. Of course, I have

been

> so

> > emotional that I bawl during and after every visit and it has

> become a

> > traumatic experience for me.

> > As far as Shriner's goes, there were difficult and painful

> experiences. But,

> > thankfully, I tend to remember the good things such as the caring

> staff and

> > the visits from the Shriner's dressed up as clowns, etc. I am so

> grateful

> > for the treatment they gave me. Unfortunately no one knew what

the

> result

> > would be years down the road. I don't hold them responsible at

all.

> > Technology changes! They did the best they could at the time.

> > I remember Winnie, also. I guess it was the kids like her, so far

> from home

> > and the other severely deformed or crippled children that made me

> feel

> > blessed. I also realize the effects this had on me which helping

me

> to

> > develop a strong stoicism. I guess we probably all have that in

> common. I

> > remember thinking that I wasn't anything like the other children

> like

> > beautiful, blond who was an amputee or Marnann(?) who had

> Cerebral

> > Palsy as well as scoliosis or others who had Muscular Dystrophy,

> etc.

> > Believe it or not, it has only been in the last 3 months or so

that

> I have

> > allowed myself to realize that scoliosis can be a crippling

> affliction. I

> > guess that probably sounds dumb. I guess I never let it slow me

> down until

> > last year. I remember years ago when I was still doing well I

went

> to buy my

> > first microwave oven. I was single at the time and I figured I

> could carry

> > it in from my car. Well I did and needless to say a few days

later

> my back

> > was hurting enough to go to the doctor. So, I looked up an

> orthopedist and

> > went to see him. When I told him what I had done he actually

yelled

> at me

> > and told me I could have broken the rod. I had no idea. Dr.

Deweese

> told me

> > I could do anything I wanted except sky diving and I guess I took

> him

> > literally. After a Medrol dosepak I was back to " normal " and went

> on for

> > about ten more years without incident.

> > I guess I needed to get all this off my chest. I appreciate this

> safe place

> > to do this. Thank you all for " listening " . Donna

[Guest guest]

Well, now you've got me teary-eyed. God surely knows what he's

doing, but I for one would prefer to be compassionate without those

open wounds.

Thank you, Eliana.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> > > I went for my second opinion yesterday. This surgeon has only

> been

> > in

> > > practice for five years. He said if I had gone to him first he

> > would have

> > > sent me to Minneapolis where he trained. With his singular

> practice

> > he said

> > > he was not equipped to handle a case such as mine. He told me

> what

> > he would

> > > suggest doing to " fix " my problem which was slightly different

> than

> > the Dr.

> > > who has been treating me so far. He told me that he is

well

> > > acquainted with Dr. and believes he has the training and

> > experience

> > > necessary to help me. He said he would call him and discuss my

> case

> > with

> > > him. I'm hoping Dr. can put aside his ego for a minute

and

> > at least

> > > listen. I have an appointment with him next week and I'm

thinking

> > it ought

> > > to be an interesting one to say the least. I guess I feel a

> little

> > better as

> > > far as having confidence in my him now. He has not been very

> > understanding

> > > with all the emotional aspects of my care. When things started

> going

> > > downhill for me I think it was probably an assault on his ego

and

> > his

> > > dealings with me were full of sarcasm and frankly, rudeness.

Any

> > time I

> > > question him he seems to be on the defense. Of course, I have

> been

> > so

> > > emotional that I bawl during and after every visit and it has

> > become a

> > > traumatic experience for me.

> > > As far as Shriner's goes, there were difficult and painful

> > experiences. But,

> > > thankfully, I tend to remember the good things such as the

caring

> > staff and

> > > the visits from the Shriner's dressed up as clowns, etc. I am

so

> > grateful

> > > for the treatment they gave me. Unfortunately no one knew what

> the

> > result

> > > would be years down the road. I don't hold them responsible at

> all.

> > > Technology changes! They did the best they could at the time.

> > > I remember Winnie, also. I guess it was the kids like her, so

far

> > from home

> > > and the other severely deformed or crippled children that made

me

> > feel

> > > blessed. I also realize the effects this had on me which

helping

> me

> > to

> > > develop a strong stoicism. I guess we probably all have that in

> > common. I

> > > remember thinking that I wasn't anything like the other

children

> > like

> > > beautiful, blond who was an amputee or Marnann(?) who

had

> > Cerebral

> > > Palsy as well as scoliosis or others who had Muscular

Dystrophy,

> > etc.

> > > Believe it or not, it has only been in the last 3 months or so

> that

> > I have

> > > allowed myself to realize that scoliosis can be a crippling

> > affliction. I

> > > guess that probably sounds dumb. I guess I never let it slow me

> > down until

> > > last year. I remember years ago when I was still doing well I

> went

> > to buy my

> > > first microwave oven. I was single at the time and I figured I

> > could carry

> > > it in from my car. Well I did and needless to say a few days

> later

> > my back

> > > was hurting enough to go to the doctor. So, I looked up an

> > orthopedist and

> > > went to see him. When I told him what I had done he actually

> yelled

> > at me

> > > and told me I could have broken the rod. I had no idea. Dr.

> Deweese

> > told me

> > > I could do anything I wanted except sky diving and I guess I

took

> > him

> > > literally. After a Medrol dosepak I was back to " normal " and

went

> > on for

> > > about ten more years without incident.

> > > I guess I needed to get all this off my chest. I appreciate

this

> > safe place

> > > to do this. Thank you all for " listening " . Donna

[Guest guest]

Sharon, I know just what you mean!

I have been meaning to mention that I noticed " spina bifida " in your

signature. I hope this did not cause too many problems for you. I

myself did not find out till I was well into middle age (from a scan

for sinus trouble) that I have a Chiari Type I malformation in the

area where brain meets spine. The doctor who broke the news to me

added helpfully, " But the neuroradiologist assures me that this has

nothing whatsoever to do with your scoliosis. "

I felt like responding, " Yeah, right! "

Eliana

> > > > I went for my second opinion yesterday. This surgeon has only

> > been

> > > in

> > > > practice for five years. He said if I had gone to him first

he

> > > would have

> > > > sent me to Minneapolis where he trained. With his singular

> > practice

> > > he said

> > > > he was not equipped to handle a case such as mine. He told me

> > what

> > > he would

> > > > suggest doing to " fix " my problem which was slightly

different

> > than

> > > the Dr.

> > > > who has been treating me so far. He told me that he is

> well

> > > > acquainted with Dr. and believes he has the training

and

> > > experience

> > > > necessary to help me. He said he would call him and discuss

my

> > case

> > > with

> > > > him. I'm hoping Dr. can put aside his ego for a minute

> and

> > > at least

> > > > listen. I have an appointment with him next week and I'm

> thinking

> > > it ought

> > > > to be an interesting one to say the least. I guess I feel a

> > little

> > > better as

> > > > far as having confidence in my him now. He has not been very

> > > understanding

> > > > with all the emotional aspects of my care. When things

started

> > going

> > > > downhill for me I think it was probably an assault on his ego

> and

> > > his

> > > > dealings with me were full of sarcasm and frankly, rudeness.

> Any

> > > time I

> > > > question him he seems to be on the defense. Of course, I have

> > been

> > > so

> > > > emotional that I bawl during and after every visit and it has

> > > become a

> > > > traumatic experience for me.

> > > > As far as Shriner's goes, there were difficult and painful

> > > experiences. But,

> > > > thankfully, I tend to remember the good things such as the

> caring

> > > staff and

> > > > the visits from the Shriner's dressed up as clowns, etc. I am

> so

> > > grateful

> > > > for the treatment they gave me. Unfortunately no one knew

what

> > the

> > > result

> > > > would be years down the road. I don't hold them responsible

at

> > all.

> > > > Technology changes! They did the best they could at the time.

> > > > I remember Winnie, also. I guess it was the kids like her, so

> far

> > > from home

> > > > and the other severely deformed or crippled children that

made

> me

> > > feel

> > > > blessed. I also realize the effects this had on me which

> helping

> > me

> > > to

> > > > develop a strong stoicism. I guess we probably all have that

in

> > > common. I

> > > > remember thinking that I wasn't anything like the other

> children

> > > like

> > > > beautiful, blond who was an amputee or Marnann(?) who

> had

> > > Cerebral

> > > > Palsy as well as scoliosis or others who had Muscular

> Dystrophy,

> > > etc.

> > > > Believe it or not, it has only been in the last 3 months or

so

> > that

> > > I have

> > > > allowed myself to realize that scoliosis can be a crippling

> > > affliction. I

> > > > guess that probably sounds dumb. I guess I never let it slow

me

> > > down until

> > > > last year. I remember years ago when I was still doing well I

> > went

> > > to buy my

> > > > first microwave oven. I was single at the time and I figured

I

> > > could carry

> > > > it in from my car. Well I did and needless to say a few days

> > later

> > > my back

> > > > was hurting enough to go to the doctor. So, I looked up an

> > > orthopedist and

> > > > went to see him. When I told him what I had done he actually

> > yelled

> > > at me

> > > > and told me I could have broken the rod. I had no idea. Dr.

> > Deweese

> > > told me

> > > > I could do anything I wanted except sky diving and I guess I

> took

> > > him

> > > > literally. After a Medrol dosepak I was back to " normal " and

> went

> > > on for

> > > > about ten more years without incident.

> > > > I guess I needed to get all this off my chest. I appreciate

> this

> > > safe place

> > > > to do this. Thank you all for " listening " . Donna

[Guest guest]

Eliana, it's interesting you should mention the spina bifida. I just

found out about it this past year when I obtained my hospital

records. Apparently since it was not the open-skin, paralysis-

causing type, the doctors preferred not to even call it spina bifida

to me and my parents, though my dad thinks he remembers the

word " meningocele " . They did enough hinting around that if my

parents had known anything about spina bifida they would have deduced

it. Like saying it was a miricle I could walk. My aunt who's a

nurse said she always knew I had it (I once assured her I didn't!).

But now that I've done some reading I can't help wondering if I have

Chiari. I do not believe I've ever been checked for it. Just

another item on my medical sleuthing list! I have some symptoms that

could be associated with Chiari, or something else. Ever noticed how

many conditions share overlapping symptoms? What about you? Do you

have any spina bifida? Does the Chiari seem to be symptomatic?

Am I the only one who thinks doctors are arrogant, and possibly

unethical to withhold information about our own bodies from us?

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

> > > > > I went for my second opinion yesterday. This surgeon has

only

> > > been

> > > > in

> > > > > practice for five years. He said if I had gone to him first

> he

> > > > would have

> > > > > sent me to Minneapolis where he trained. With his singular

> > > practice

> > > > he said

> > > > > he was not equipped to handle a case such as mine. He told

me

> > > what

> > > > he would

> > > > > suggest doing to " fix " my problem which was slightly

> different

> > > than

> > > > the Dr.

> > > > > who has been treating me so far. He told me that he

is

> > well

> > > > > acquainted with Dr. and believes he has the training

> and

> > > > experience

> > > > > necessary to help me. He said he would call him and discuss

> my

> > > case

> > > > with

> > > > > him. I'm hoping Dr. can put aside his ego for a

minute

> > and

> > > > at least

> > > > > listen. I have an appointment with him next week and I'm

> > thinking

> > > > it ought

> > > > > to be an interesting one to say the least. I guess I feel a

> > > little

> > > > better as

> > > > > far as having confidence in my him now. He has not been

very

> > > > understanding

> > > > > with all the emotional aspects of my care. When things

> started

> > > going

> > > > > downhill for me I think it was probably an assault on his

ego

> > and

> > > > his

> > > > > dealings with me were full of sarcasm and frankly,

rudeness.

> > Any

> > > > time I

> > > > > question him he seems to be on the defense. Of course, I

have

> > > been

> > > > so

> > > > > emotional that I bawl during and after every visit and it

has

> > > > become a

> > > > > traumatic experience for me.

> > > > > As far as Shriner's goes, there were difficult and painful

> > > > experiences. But,

> > > > > thankfully, I tend to remember the good things such as the

> > caring

> > > > staff and

> > > > > the visits from the Shriner's dressed up as clowns, etc. I

am

> > so

> > > > grateful

> > > > > for the treatment they gave me. Unfortunately no one knew

> what

> > > the

> > > > result

> > > > > would be years down the road. I don't hold them responsible

> at

> > > all.

> > > > > Technology changes! They did the best they could at the

time.

> > > > > I remember Winnie, also. I guess it was the kids like her,

so

> > far

> > > > from home

> > > > > and the other severely deformed or crippled children that

> made

> > me

> > > > feel

> > > > > blessed. I also realize the effects this had on me which

> > helping

> > > me

> > > > to

> > > > > develop a strong stoicism. I guess we probably all have

that

> in

> > > > common. I

> > > > > remember thinking that I wasn't anything like the other

> > children

> > > > like

> > > > > beautiful, blond who was an amputee or Marnann(?)

who

> > had

> > > > Cerebral

> > > > > Palsy as well as scoliosis or others who had Muscular

> > Dystrophy,

> > > > etc.

> > > > > Believe it or not, it has only been in the last 3 months or

> so

> > > that

> > > > I have

> > > > > allowed myself to realize that scoliosis can be a crippling

> > > > affliction. I

> > > > > guess that probably sounds dumb. I guess I never let it

slow

> me

> > > > down until

> > > > > last year. I remember years ago when I was still doing well

I

> > > went

> > > > to buy my

> > > > > first microwave oven. I was single at the time and I

figured

> I

> > > > could carry

> > > > > it in from my car. Well I did and needless to say a few

days

> > > later

> > > > my back

> > > > > was hurting enough to go to the doctor. So, I looked up an

> > > > orthopedist and

> > > > > went to see him. When I told him what I had done he

actually

> > > yelled

> > > > at me

> > > > > and told me I could have broken the rod. I had no idea. Dr.

> > > Deweese

> > > > told me

> > > > > I could do anything I wanted except sky diving and I guess

I

> > took

> > > > him

> > > > > literally. After a Medrol dosepak I was back to " normal "

and

> > went

> > > > on for

> > > > > about ten more years without incident.

> > > > > I guess I needed to get all this off my chest. I appreciate

> > this

> > > > safe place

> > > > > to do this. Thank you all for " listening " . Donna

[Guest guest]

Sharon,

You are far from the only one who thinks doctors are arrogant and

unethical for withholding info. from us. I found out just this year

that it was known years ago that I had flatback syndrome, but no one

bothered to explain to me then that it was the cause of many of my

symptoms, and that it could get worse and cause other symptoms (which

it did) and might need surgery (which it does). I thought my back

was all set and that my symptoms were caused by my hip arthritis. I

sure wouldn't have quit my job if I'd known I'd need multiple

surgeries and be out of work for more than a few months for my hip

surgery. I would have stuck it out 'til I could have gone on

disability. Arrogant, unethical, unfair ... and there are a few

stronger words I could use also to describe the predicament many of

us are now in!

Loriann

> > > > > > I went for my second opinion yesterday. This surgeon has

> only

> > > > been

> > > > > in

> > > > > > practice for five years. He said if I had gone to him

first

> > he

> > > > > would have

> > > > > > sent me to Minneapolis where he trained. With his

singular

> > > > practice

> > > > > he said

> > > > > > he was not equipped to handle a case such as mine. He

told

> me

> > > > what

> > > > > he would

> > > > > > suggest doing to " fix " my problem which was slightly

> > different

> > > > than

> > > > > the Dr.

> > > > > > who has been treating me so far. He told me that

he

> is

> > > well

> > > > > > acquainted with Dr. and believes he has the

training

> > and

> > > > > experience

> > > > > > necessary to help me. He said he would call him and

discuss

> > my

> > > > case

> > > > > with

> > > > > > him. I'm hoping Dr. can put aside his ego for a

> minute

> > > and

> > > > > at least

> > > > > > listen. I have an appointment with him next week and I'm

> > > thinking

> > > > > it ought

> > > > > > to be an interesting one to say the least. I guess I feel

a

> > > > little

> > > > > better as

> > > > > > far as having confidence in my him now. He has not been

> very

> > > > > understanding

> > > > > > with all the emotional aspects of my care. When things

> > started

> > > > going

> > > > > > downhill for me I think it was probably an assault on his

> ego

> > > and

> > > > > his

> > > > > > dealings with me were full of sarcasm and frankly,

> rudeness.

> > > Any

> > > > > time I

> > > > > > question him he seems to be on the defense. Of course, I

> have

> > > > been

> > > > > so

> > > > > > emotional that I bawl during and after every visit and it

> has

> > > > > become a

> > > > > > traumatic experience for me.

> > > > > > As far as Shriner's goes, there were difficult and

painful

> > > > > experiences. But,

> > > > > > thankfully, I tend to remember the good things such as

the

> > > caring

> > > > > staff and

> > > > > > the visits from the Shriner's dressed up as clowns, etc.

I

> am

> > > so

> > > > > grateful

> > > > > > for the treatment they gave me. Unfortunately no one knew

> > what

> > > > the

> > > > > result

> > > > > > would be years down the road. I don't hold them

responsible

> > at

> > > > all.

> > > > > > Technology changes! They did the best they could at the

> time.

> > > > > > I remember Winnie, also. I guess it was the kids like

her,

> so

> > > far

> > > > > from home

> > > > > > and the other severely deformed or crippled children that

> > made

> > > me

> > > > > feel

> > > > > > blessed. I also realize the effects this had on me which

> > > helping

> > > > me

> > > > > to

> > > > > > develop a strong stoicism. I guess we probably all have

> that

> > in

> > > > > common. I

> > > > > > remember thinking that I wasn't anything like the other

> > > children

> > > > > like

> > > > > > beautiful, blond who was an amputee or Marnann(?)

> who

> > > had

> > > > > Cerebral

> > > > > > Palsy as well as scoliosis or others who had Muscular

> > > Dystrophy,

> > > > > etc.

> > > > > > Believe it or not, it has only been in the last 3 months

or

> > so

> > > > that

> > > > > I have

> > > > > > allowed myself to realize that scoliosis can be a

crippling

> > > > > affliction. I

> > > > > > guess that probably sounds dumb. I guess I never let it

> slow

> > me

> > > > > down until

> > > > > > last year. I remember years ago when I was still doing

well

> I

> > > > went

> > > > > to buy my

> > > > > > first microwave oven. I was single at the time and I

> figured

> > I

> > > > > could carry

> > > > > > it in from my car. Well I did and needless to say a few

> days

> > > > later

> > > > > my back

> > > > > > was hurting enough to go to the doctor. So, I looked up

an

> > > > > orthopedist and

> > > > > > went to see him. When I told him what I had done he

> actually

> > > > yelled

> > > > > at me

> > > > > > and told me I could have broken the rod. I had no idea.

Dr.

> > > > Deweese

> > > > > told me

> > > > > > I could do anything I wanted except sky diving and I

guess

> I

> > > took

> > > > > him

> > > > > > literally. After a Medrol dosepak I was back to " normal "

> and

> > > went

> > > > > on for

> > > > > > about ten more years without incident.

> > > > > > I guess I needed to get all this off my chest. I

appreciate

> > > this

> > > > > safe place

> > > > > > to do this. Thank you all for " listening " . Donna