RE: I don't blame, but I'm still ANGRY!

[Guest guest]

There was a long-term study of the effects of Harrington rod surgery. Someone

very reliable and scientifically trained, who had had her original surgery with

Dr. Harrington, told me that she was shocked when she saw the final longitudinal

outcomes data. Her own adverse information (re " flatback " syndrome with need for

subsequent revision surgery) had not been included anywhere. She had made

absolutely sure that the people in charge had the relevant information for

inclusion under adverse effects of the Harrington surgery.

One wonders what other omissions might have delayed recognition of the problem,

while meanwhile surgeons went on installing new Harrington rods and producing,

albeit unwittingly, new cases of disabling flatback syndrome.

--- Original Message -----

From:

Sent: Tuesday, September 16, 2003 11:56 AM

Subject: I don't blame, but I'm still ANGRY!

Hi Debbie and Beth:

I felt like I needed to chime in with one thought. I agree with you

about the non-malicious intent of the hardware system (Harrington

Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

Harrington in Houston, Dr. Dickson) for a terribly, digusting

bed side manner once problems started to surface. My surgery was in

1985 and from 1987 - 1995 as my problems were increasing his

response EVERY time was " Fusions Fine, must just be muscle spasms " .

Everytime I think back to that I get FURIOUS! It took me until last

year (finding this group!) to find out what was wrong with me!

From what I've heard... Dr. Harrington died in 1980, I wonder what

he would have said about this poor treatment by his followers! I

would hope he would have been more compassionate and work toward

helping those who needed it (whether it was a result of his hardware

or not!). I'd rather think positive of him than negative!

Take care all of you! Just my 2 cents worth!

in Texas

[Guest guest]

,

Have to agree with your comment about Dr. Harrington's protegees' NOT

learning much about bedside manners...or as was in my surgeon's case, not the

manners God gave a rock! I had my Harrington done in 1970 at the Cleveland

Clinic Hospital, granted, a HUGE medical complex even way back then. I had to

return quite a few times over the next several years for follow-up visits of

course...6 months and 9 months to remove those monsterous Riser body casts

changed and removed; then yearly for severeral years post-op. An x-ray was

always taken prior to seeing the doctor and when my parents and I would

FINALLY get to see my surgeon (often after waiting anywhere from 2-5 hours!)

he always said the same thing...he'd throw the films up on the light board,

glance at my back and say " Beautiful fusion...see you next visit. " !!!

6 years after my surgery I returned to the Cleveland Clinic...AS AN

EMPLOYEE! The first time I saw my surgeon walking down the hallway of the

hospital I said, " Hi Dr. Evarts, how are you? Rememebr me? " ...to which he

replied, " Actually no, should I? " So I turned around, pointed to my spine and

said, " Now do you remember me...the 'BEAUTIFUL FUSION'? " Then I turned around,

looked him straight in the eye and said, " I have a name, it's Beth...and the

next time you see this face I suggest you remember that name, sir! I'm more

than just a " beautiful fusion " , I'm a human being. Try to keep that in mind. "

I worked at the Cleveland Clinic for 11 years...he was there for about 4 of

those years. But every time he ever saw me after that he made it a point to

say, " Hello BETH! " Sounds funny now, but I do believe I made my point!

All the best,

Beth

[Guest guest]

Hi ,

Small world. Dr. Erwin, Dickson's associate, did my surgery. After my

first visit to Erwin for pain, he sent me to Dr. Heggeness at the The

Institute for Spinal Disorders. He told me the same thing. Gave me

Daypro and told me to come back in 6 months. It is terribly upsetting

that they never took the continued problems more seriously.

I am seeing LeGrone next week and was wondering, were you ever able

to get any x-rays or anything from Dickson? I was told that the

Scoliosis Associates were no longer in business. True?

> Hi Debbie and Beth:

>

> I felt like I needed to chime in with one thought. I agree with

you

> about the non-malicious intent of the hardware system (Harrington

> Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

> Harrington in Houston, Dr. Dickson) for a terribly, digusting

> bed side manner once problems started to surface. My surgery was

in

> 1985 and from 1987 - 1995 as my problems were increasing his

> response EVERY time was " Fusions Fine, must just be muscle

spasms " .

> Everytime I think back to that I get FURIOUS! It took me until last

> year (finding this group!) to find out what was wrong with me!

>

> From what I've heard... Dr. Harrington died in 1980, I wonder what

> he would have said about this poor treatment by his followers! I

> would hope he would have been more compassionate and work toward

> helping those who needed it (whether it was a result of his

hardware

> or not!). I'd rather think positive of him than negative!

>

> Take care all of you! Just my 2 cents worth!

>

> in Texas

[Guest guest]

,

I saw Dr. Dickson just before his retirement. (My surgen in 1979 was Dr

Erwin, his associate.) I wasn't fully aware of flat back syndrome and all

that that implies when I saw him. He took xrays and then said to me. " It

looks to me as though you are walking a bit forward. You may have flat back

syndrome. Some people think that flatback syndrome is caused by Harrington

rods, but I don't think so. I suggest you loose some weight. "

Maybe he was being dishonest to me or lieing to himself. How can he live

with the knowlege that so many of those people that he did surgery on so

long ago, are now living in pain and may have been better off without this

surgery.

One of the first rules of medicine is DO NO HARM.

FROMTHEGROVES

Original Message:

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

From: @...

Date: Tue, 16 Sep 2003 16:56:19 -0000

Subject: I don't blame, but I'm still ANGRY!

Hi Debbie and Beth:

I felt like I needed to chime in with one thought. I agree with you

about the non-malicious intent of the hardware system (Harrington

Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

Harrington in Houston, Dr. Dickson) for a terribly, digusting

bed side manner once problems started to surface. My surgery was in

1985 and from 1987 - 1995 as my problems were increasing his

response EVERY time was " Fusions Fine, must just be muscle spasms " .

Everytime I think back to that I get FURIOUS! It took me until last

year (finding this group!) to find out what was wrong with me!

From what I've heard... Dr. Harrington died in 1980, I wonder what

he would have said about this poor treatment by his followers! I

would hope he would have been more compassionate and work toward

helping those who needed it (whether it was a result of his hardware

or not!). I'd rather think positive of him than negative!

Take care all of you! Just my 2 cents worth!

in Texas

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

,

Yes, you will find others on this list who are products of Scoliosis

Associates in Houston!

Dickson still has an office there, but is retired. Dr. Darrell

Hanson took over his practice.

When I learned about all the problems with harrington rods last

November, I scheduled appointments with Dr. LaGrone and one other in

Plano for Januray. When I called to get my x-rays in Houston, they

had been destroyed! I was furious. I decided to go ahead and see

the doctor who took over for Dickson (Dr. Hanson) and try to get

records at that visit. I could get into see him before my other two

appointments and I wanted to see what he said about my condition now

that I was " in the know " about harrington rods. My visit with him

was not productive except that I did obtain all my records from the

file, and a before and after photo that was in the file. Dr.

Hanson was VERY young and did recommmend rod removal, but would not

admit I was out of balance (which I am!) causing my neck to

degenerate rapidly.

I would recommend you call the office (Dr. Hanson has a male

assistant, if I think of his name I'll e-mail you again) and insist

you get a copy of your records in your file. If you call directory

assistance you can get the office number under Dickson. It is

my understanding that all x-rays are destroyed after 10 years. You

would think at least a phone call offering to send them to you for

money would be appropriate for something like a major spine

surgery!!! I would have gladly paid 100 or more for them.

If you have trouble let me know, you have a right to those records!

Good luck on your visit next week! We are all rooting for ya!

Fused T4-L2 1985

Rod Removal for bursitis April 2003

Diskectomy (c6-7)scheduled for October 13

, " lhodges240 "

<lhodges240@y...> wrote:

> Hi ,

> Small world. Dr. Erwin, Dickson's associate, did my surgery. After

my

> first visit to Erwin for pain, he sent me to Dr. Heggeness at the

The

> Institute for Spinal Disorders. He told me the same thing. Gave me

> Daypro and told me to come back in 6 months. It is terribly

upsetting

> that they never took the continued problems more seriously.

> I am seeing LeGrone next week and was wondering, were you ever

able

> to get any x-rays or anything from Dickson? I was told that the

> Scoliosis Associates were no longer in business. True?

>

>

> > Hi Debbie and Beth:

> >

> > I felt like I needed to chime in with one thought. I agree with

> you

> > about the non-malicious intent of the hardware system

(Harrington

> > Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

> > Harrington in Houston, Dr. Dickson) for a terribly,

digusting

> > bed side manner once problems started to surface. My surgery

was

> in

> > 1985 and from 1987 - 1995 as my problems were increasing his

> > response EVERY time was " Fusions Fine, must just be muscle

> spasms " .

> > Everytime I think back to that I get FURIOUS! It took me until

last

> > year (finding this group!) to find out what was wrong with me!

> >

> > From what I've heard... Dr. Harrington died in 1980, I wonder

what

> > he would have said about this poor treatment by his followers!

I

> > would hope he would have been more compassionate and work toward

> > helping those who needed it (whether it was a result of his

> hardware

> > or not!). I'd rather think positive of him than negative!

> >

> > Take care all of you! Just my 2 cents worth!

> >

> > in Texas

[Guest guest]

You sure do know how to make a point, Beth! Good for you!!

Reading all the feisty posts this a.m. is making me consider writing

a short letter to the doc who did my H.R. fusion. He is now retired

but still living nearby. I had called him about a year ago at his

home (I found it somewhat unbelievable at the time that I was able to

find him listed in the white pages of our phone directory even though

he is retired and no longer has the M.D. initials after his name).

He was nice enough to return my phone call then, and admitted to me

that some people have problems with their Harrington Rods and the

longer the fusion, the worse flatback, but that back when I had my

surgery (1977) doctors didn't yet know that the rods caused

problems. When I asked him who I could see regarding correcting the

flatback, he referred me to a local doctor, who I later found out has

NOT done revision surgeries of this type. He steered me AWAY from a

doctor who HAS done some, saying that he treats mostly kids with

scoliosis.

I'm thinking that I should report back to my retired doctor what I

found out about the two docs we discussed so that in case any other

sufferers contact him, he might be more likely to refer them to the

one with actual experience.

Thanks for listening -- writing to you all helps give me courage to

do the right thing and perhaps save others from being sent on a wild

goose chase to get knowledgable advice about flatback revision

surgery!

loriann

[Guest guest]

My surgeon also advised me to lose weight when I first reported pain some months

after my Harrington rod was installed. At the time I was admittedly up to a size

7 or so from a size 5. I asked him how thin a person needed to be to minimize

spinal pain, and he said, " almost anorexic. "

Later, when he could not avoid telling me I had flatback syndrome -- by this

time it had gone on a good ten years, and I was getting pretty stooped and

living in severe pain despite being underweight with little appetite -- he

insisted that my sagittal imbalance stemmed from my " deteriorated disk tissue. "

End of story.

Thankfully, two or three physicians who examined me subsequently took one look

at my spine, my disks (or what was left of them), my Harrington rod, and opted

for full disclosure. It is truly astonishing to me what some people can boldly

and baldly deny despite the fact that it is staring everyone in the face. I

learned this way back when, from the story of the emperor who had no clothes,

but it still confounds me every time!

I don't blame, but I'm still ANGRY!

Hi Debbie and Beth:

I felt like I needed to chime in with one thought. I agree with you

about the non-malicious intent of the hardware system (Harrington

Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

Harrington in Houston, Dr. Dickson) for a terribly, digusting

bed side manner once problems started to surface. My surgery was in

1985 and from 1987 - 1995 as my problems were increasing his

response EVERY time was " Fusions Fine, must just be muscle spasms " .

Everytime I think back to that I get FURIOUS! It took me until last

year (finding this group!) to find out what was wrong with me!

From what I've heard... Dr. Harrington died in 1980, I wonder what

he would have said about this poor treatment by his followers! I

would hope he would have been more compassionate and work toward

helping those who needed it (whether it was a result of his hardware

or not!). I'd rather think positive of him than negative!

Take care all of you! Just my 2 cents worth!

in Texas

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Hi Debbie,

I'm in Waco, so anytime you travel up 1-35 I'd love to meet you!

I'm afraid I never come to Houston, but if I do I'll contact you!

I'm the one that you corresponded with by e-mail over a month ago or

so.

I hate that you were also treated this way by Dr. Dickson!!!!

Take care,

Malesovas

> Dear and ,

> Dr. Dickson was also my Dr. from the time that Dr. Harrington

retired until

> 2001 when he FINALLY, after seeing me for 15 yrs. or more, told me

that I

> needed revision surgery. He STILL never mentioned the word

flatback to me

> and it wasn't until I got on the computer that night that I

finally put a

> name to what I had. So , believe me, in my mind no one person

has done

> more damage, to me at least, than Dr. Dickson. I, like ,

don't know if

> it was out of dishonesty, ignorance or what, but I have to say

that I

> believe it was the former. This man saw me many, many times while

I had most

> of the symptoms that I have today, and believe me, a 5 yr. old

could

> diagnose me if he could read, and he NEVER even told me there was

such a

> thing as flatback. Was I ignorant not to be checking with other

Doctors when

> I didn't get relief? I guess so, and believe me I live with that

every day

> of my life. But I thought I was going to the BEST in the Scoliosis

field.

> Dr. Harrington had been the pioneer in his field and as far as I

knew he was

> the best, so I thought, he must have trained the best. I think he

owed me,

> as a scoliosis patient in pain, at least the knowledge that he had

about

> flatback.

>

> So as you can see, angry doesn't even begin to say what I feel for

Dr.

> Dickson, but it doesn't change the way I feel on some other

aspects.

>

> Oh,and by the way, do you guys live in Houston. I thought since

you were

> Erwin/Dickson patients you might live here. If so, I'd love to

meet you

> both.

>

> Be Safe and God Bless,

> Debbie

>

> >From: " Labsol@e... " <labsol@e...>

> >Reply-

> >

> >Subject: RE: I don't blame, but I'm still ANGRY!

> >Date: Tue, 16 Sep 2003 16:56:22 -0400

> >

> >,

> >I saw Dr. Dickson just before his retirement. (My surgen in 1979

was Dr

> >Erwin, his associate.) I wasn't fully aware of flat back syndrome

and all

> >that that implies when I saw him. He took xrays and then said to

me. " It

> >looks to me as though you are walking a bit forward. You may have

flat back

> >syndrome. Some people think that flatback syndrome is caused by

Harrington

> >rods, but I don't think so. I suggest you loose some weight. "

> >

> >Maybe he was being dishonest to me or lieing to himself. How can

he live

> >with the knowlege that so many of those people that he did

surgery on so

> >long ago, are now living in pain and may have been better off

without this

> >surgery.

> >

> >One of the first rules of medicine is DO NO HARM.

> >

> > FROMTHEGROVES

> >

> >Original Message:

> >-----------------

> >From: @m...

> >Date: Tue, 16 Sep 2003 16:56:19 -0000

> >

> >Subject: I don't blame, but I'm still ANGRY!

> >

> >

> >Hi Debbie and Beth:

> >

> >I felt like I needed to chime in with one thought. I agree with

you

> >about the non-malicious intent of the hardware system (Harrington

> >Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

> >Harrington in Houston, Dr. Dickson) for a terribly,

digusting

> >bed side manner once problems started to surface. My surgery was

in

> >1985 and from 1987 - 1995 as my problems were increasing his

> >response EVERY time was " Fusions Fine, must just be muscle

spasms " .

> >Everytime I think back to that I get FURIOUS! It took me until

last

> >year (finding this group!) to find out what was wrong with me!

> >

> >From what I've heard... Dr. Harrington died in 1980, I wonder what

> >he would have said about this poor treatment by his followers! I

> >would hope he would have been more compassionate and work toward

> >helping those who needed it (whether it was a result of his

hardware

> >or not!). I'd rather think positive of him than negative!

> >

> >Take care all of you! Just my 2 cents worth!

> >

> > in Texas

> >

> >

> >

> >

> >Support for scoliosis-surgery veterans with Harrington Rod

Malalignment

> >Syndrome. Not medical advice. Group does not control ads or

endorse any

> >advertised products.

> >

> >

[Guest guest]

Debbie and ,

I live in Humble. I had harrington rods place in 1977 by Dr. Erwin. I have

led a pretty full, pain free life until this past year. Now, I am bent

over pretty far. It's difficult to live this way and work and take care of

4 kids. I would love to meet ya'll. Do ya'll live in Houston?

My husband has a business trip to San Francisco next month. After reading

an inspiring post written by a person that recently had revision surgery by

Dr. Berven, I have decided to go with my husband on that trip and I have an

appointment to see Dr. Berven. S.F. is along way from Houston, but then

again so is Amarillo.

Original Message:

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

From: Debbie Krus ddkrus@...

Date: Wed, 17 Sep 2003 11:28:54 -0500

Subject: RE: I don't blame, but I'm still ANGRY!

Dear and ,

Dr. Dickson was also my Dr. from the time that Dr. Harrington retired until

2001 when he FINALLY, after seeing me for 15 yrs. or more, told me that I

needed revision surgery. He STILL never mentioned the word flatback to me

and it wasn't until I got on the computer that night that I finally put a

name to what I had. So , believe me, in my mind no one person has done

more damage, to me at least, than Dr. Dickson. I, like , don't know if

it was out of dishonesty, ignorance or what, but I have to say that I

believe it was the former. This man saw me many, many times while I had

most

of the symptoms that I have today, and believe me, a 5 yr. old could

diagnose me if he could read, and he NEVER even told me there was such a

thing as flatback. Was I ignorant not to be checking with other Doctors

when

I didn't get relief? I guess so, and believe me I live with that every day

of my life. But I thought I was going to the BEST in the Scoliosis field.

Dr. Harrington had been the pioneer in his field and as far as I knew he

was

the best, so I thought, he must have trained the best. I think he owed me,

as a scoliosis patient in pain, at least the knowledge that he had about

flatback.

So as you can see, angry doesn't even begin to say what I feel for Dr.

Dickson, but it doesn't change the way I feel on some other aspects.

Oh,and by the way, do you guys live in Houston. I thought since you were

Erwin/Dickson patients you might live here. If so, I'd love to meet you

both.

Be Safe and God Bless,

Debbie

>From: " Labsol@... " <labsol@...>

>Reply-

>

>Subject: RE: I don't blame, but I'm still ANGRY!

>Date: Tue, 16 Sep 2003 16:56:22 -0400

>

>,

>I saw Dr. Dickson just before his retirement. (My surgen in 1979 was Dr

>Erwin, his associate.) I wasn't fully aware of flat back syndrome and all

>that that implies when I saw him. He took xrays and then said to me. " It

>looks to me as though you are walking a bit forward. You may have flat back

>syndrome. Some people think that flatback syndrome is caused by Harrington

>rods, but I don't think so. I suggest you loose some weight. "

>

>Maybe he was being dishonest to me or lieing to himself. How can he live

>with the knowlege that so many of those people that he did surgery on so

>long ago, are now living in pain and may have been better off without this

>surgery.

>

>One of the first rules of medicine is DO NO HARM.

>

> FROMTHEGROVES

>

>Original Message:

>-----------------

>From: @...

>Date: Tue, 16 Sep 2003 16:56:19 -0000

>

>Subject: I don't blame, but I'm still ANGRY!

>

>

>Hi Debbie and Beth:

>

>I felt like I needed to chime in with one thought. I agree with you

>about the non-malicious intent of the hardware system (Harrington

>Rods) of the day, BUT I do fault my doc (a direct trainee of Dr.

>Harrington in Houston, Dr. Dickson) for a terribly, digusting

>bed side manner once problems started to surface. My surgery was in

>1985 and from 1987 - 1995 as my problems were increasing his

>response EVERY time was " Fusions Fine, must just be muscle spasms " .

>Everytime I think back to that I get FURIOUS! It took me until last

>year (finding this group!) to find out what was wrong with me!

>

>From what I've heard... Dr. Harrington died in 1980, I wonder what

>he would have said about this poor treatment by his followers! I

>would hope he would have been more compassionate and work toward

>helping those who needed it (whether it was a result of his hardware

>or not!). I'd rather think positive of him than negative!

>

>Take care all of you! Just my 2 cents worth!

>

> in Texas

>

>

>

>

>Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

>advertised products.

>

>

[Guest guest]

,

I NEVER EVEN HEARD the term " Flatback Syndrome " for the first 4 years I

spent going from doctor to doctor! I saw 3 Orthopedic surgeons, one boasted

being a scoliosis specialist!!: also saw a Neurosurgeon because I thought the

neuropathy was the main problem; saw a Pain Management specialist who did

intra-dural steroid injection once a month for 6 months...talk about

excruitiating pain!! I thought Pain doc were suppose to stop the pain not

cause it! I also spent several months going to P.T....you name it, I probably

tied it! EVen accupuncture!! And the whole time I was subjecting myself (and

my family!)to this physical and mental " torture " , I continued to

deteriorate...and never heard the words Flatback Syndrome.

Here's a questions for all of you...what were they trying to conceal? I pray

it was only ingorance of the conidition...

All the best,

Beth

[Guest guest]

Loriann,

I admire your courage to call your former docter and ask him his opinion!!

And to his credit, he did return your call and tell you the sad truth...that

those of us who thought we were " permenantly fixed " with our Harringtons and

long fusions are now in a real pickle " !! But pleae, DO NOT STOP TRYING TO FIND

A SURGEON WHO IS A REVISON SPECIALIST!!!It is imperative that you be treated

by someone who knows all the facts...all the ups and downs...all the good and

bad...of Flatback Syndrome/HARMS. The surgical " mechanics " of reversing the

effects of the Flatback are multi-focal. The treatment, be it surgical and/or

non-surgical, must target not only the Flatback deformity (the " falling

foward " , " penguin-walk " bone defects)but also the neurological aspects of

Flatback. As the Flatback progresses, most of us begin to develop spinal cord

stenosis, severe neuropathy in our legs, herniated discs above and below the

original fusions...all sorts of totally annoying problems just keep cropping

up until finally you say " ENOUGH ALREADY!!! SOMEBODY PLEASE HELP ME!! I WANT

MY LIFE BACK!!! " You owe it to yourself to find a doctor who understands the

emotional as well as the physical strains this condition causes.

Sorry I went on and on like that friends...I'm sorta' having a bad day

here!! I live in land and we just experienced " ISABELLE " !!! Whenever the

barometric pressure makes drastic changes, either up or down (as it does when

there's a major hurricane!) I experience such a major increase in my pain,

that no amount of medication can relieve it!! I tried my hardest to help my

husband and son rake/mop/shovel/Shop-vac/whatever the remenants of Isabelle in

our backyard and basement...but I was just in too much pain...God, I HATE

that!!! I want to pitch-in like all my other neighbors are doing but I just

plain hurt too much!! I HATE IT!!!

ALl the best,

Beth

[Guest guest]

Beth,

Thanks for your encouragement. I definitely plan on pursuing revision

surgery at some point in the future (with a doctor who has lots of

specific experience getting positive outcomes), hopefully before any

damage occurs to my cervical spine or any more neurological damage.

One of the revision doctors I've communicated with indicated that my

lateral recess stenosis at L5 level would be corrected by revision

surgery in addition to restoring the appropriate lordosis. But I'm

not quite clear on whether the stenosis automatically gets corrected

during the revision or whether it's extra work for the doctor. I

have no free vertebrae below my current fusion (since I'm fused to

sacrum already).

As far as the emotional, the second most important thing I look for

in a surgeon (first thing being skill/experience) is that he is

responsive to my concerns. Last thing I need is a jerk doctor who

won't help me with any complications that might come up. I guarantee

you that that kind of treatment would get me quite emotional.

I'm so sorry the hurricane created problems for you, and that you

feel bad for not being able to help as much as you'd like. I know

that feeling. It drives me nuts to have to ask my kids and husband

to pitch in more, but I try to remember that I'm doing the best that

I can with the limitations I've been given. That's all that we can

really ask of ourselves. So don't beat yourself up -- you don't

deserve that. Wishing you better days in the future,

loriann