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Hi ,

Thank you so much for your reply. It was great to hear from someone else who

had surgery at UW-Madison. I believe Dr. Drummond (my doctor)left the next year

after my surgery.

Sorry to hear that you have MS also. However, it's also nice to know I am not

the only one dealing with multiple health problems.

I would definately appreciate any information you could give me about

Northwestern and the doctor you saw there. The main reason I was thinking I

need to go back to my original hospital is for my information about my original

surgery. Don't you need your xrays and paperwork when you go for consultation?

Unfortunately it will be 30 years in October since I had my spinal fusion, and I

don't have any of that. I also don't even remember all the details of my

scoliosis. I really thought that it was a problem that had been corrected in my

childhood and never thought I'd have to think about new surgery! I'm afraid now

that I was wrong.

I live in Neenah, which is just south of Appleton, WI. We're about halfway

between Green Bay and Milwaukee. My husband is in sales and travels all over

the state for appointments. I know he has been to both of the towns you

mentioned where your parents grew up! I also have a friend who grew up in

Vesper, which I believe is also in that area.

In the 1990's (when I rarely had back problems) I worked in child care as a live

in nanny. One of the families I worked for lived in Buffalo Grove, IL, a

northern suburb of Chicago. Do you live anywhere near there?

The family I lived with not only had 3 children under 4, but two of them were

twins! They were nine months old when I started and I was there for two years.

I am still close to the family and last year attended the boys Bar Mitvah. It's

hard remember when I was there, pushing them in a double stroller up a big ramp

at a mall!

I don't know if I should be happy for all the years I had relatively pain free,

or sad for the pain I am in now. I suppose that is what we all feel!

Take care,

Noreen

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

From: " " < >

Sent: Wed, March 10, 2010 5:02:57 AM

Subject: [ ] Digest Number 3352

Messages In This Digest (7 Messages)

1a. Re: A few questions From: rebeccamaas

2a. Re: Hello to group From: cammaltby

2b. Re: Hello to group From: Kirkaldie

3a. Re: harrington rod and chiari malformation From: sota4me

3b. Re: harrington rod and chiari malformation From: sota4me

3c. Re: harrington rod and chiari malformation From: erica rasmussen

3d. Re: harrington rod and chiari malformation From: sota4me

View All Topics | Create New Topic Messages

1a. Re: A few questions

Posted by: " rebeccamaas " rebeccamaas@... rebeccamaas

Tue Mar 9, 2010 5:57 am (PST)

Hi there! My name is , and I live in northern Illinois. I had my original

spinal fusion in 1989 at UW-Madison! The doctor you spoke of must have been gone

by then, and I was seen by Dr. Mann. I heard that he just retired last

year. I too was given the same set of restrictions that you were given as far as

horse-back riding, skiing, etc. I was told that having kids was fine, and

successfully had 2 girls a few years back. I didn't have Harrington rods - they

were using the " next generation " Luque rods in 1989. Unfortunately, they didn't

hold off flatback for me, and I had revision surgery in 2007.

I would not bother going back to UW Madison for a consult, especially if you see

someone who focuses on children's scoliosis issues. I went there in 1999 when I

was first having some troubling symptoms (which turned out to be multiple

sclerosis, but the flatback was clearly visible on my x-rays at that point!),

and my former surgeon told me that my fusion looks beautiful and to look

elsewhere for answers to my troubling symptoms.

We moved out near Los Angeles for a few years, and I saw a couple of regular

orthos out there, all of whom said " Wow, what a long fusion - it looks solid!

What a great job! Go look elsewhere for answers to your problems. " It wasn't

until moving back to northern Illinois that I came upon online groups like this

where people were talking about various post-fusion issues that I decided to

look into it further.

I chose to consult with a revision surgeon at Northwestern Memorial Hospital in

Chicago, and then had my revision surgeries there in the summer of 2007. I don't

believe there is anyone at UW Madison who has extensive revision experience. I

recall one member who went with someone there, but she hasn't posted much since

her surgery, and I cannot remember her name. I was very happy with the care and

attention I received at Northwestern with Dr Koski, and he would probably be

worth having a consultation with since he is fairly close. There is a very good

group of revision surgeons in St Louis - Drs. Bridwell and Lenke.

If you would like more info about Northwestern, and on getting an appointment

there, please don't hesitate to ask. Typically it takes 3-4 months to get an

appt, but they do have a special spine program where they get patients with

serious spinal deformities in much faster.

Good luck with everything! Where in Wisconsin are you located? My parents grew

up in the tiny towns of Pittsville & Babcock - which are between Marshfield &

Wisconsin Rapids :)

> >

> >

> > I'm new to the group and taken the suggestion to read through older

> > posts before posting. I did find many inspiring and informative, and

> > it's very reassuring to know that I'm not alone in this pain. However,

> > I do have a few questions on topics that have been touched on, but I

> > haven't seen specific answers to.

> >

> > Has anyone had surgery for endometriosis and has that helped with lower

> > back pain? Has breast reduction surgery made a big difference in the

> > pain and does that help long term? Also will surgeons operate on

> > someone significantly overweight (230 pounds) and will losing weight

> > alone alleviate the pain?

> >

> > This is my story. I wore a milwaukee brace from age 9 until 13, when my

> > doctor said I was growing " too tall " and it wasn't helping anymore, that

> > my curves (upper and lower) were getting significantly worse. I'm not

> > sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> > had a spinal fusion done at the University Hospital in Madison, WI by

> > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > believe he went on to practice at Children's Hospital in Philadelphia.

> > I believe I was also one of the first in the country to have two

> > harrington rods in my fusion.

> >

> > I remember at my last post op doctor visit being told to avoid horse

> > back riding, skiing, and that I wouldn't need to come back unless I had

> > children or a serious car accident. Since neither happened (I was

> > pregnant twice but had two early miscarraiges) I never went back except

> > in 2003 when I had a TIA (small stroke). At that time they said my

> > fusion looked fine.

> >

> > I realise I have been very lucky, I've had a few bouts with pain (mainly

> > from lifting heavy objects) through the years, that would get better

> > with rest. I thought of my scoliosis as a childhood problem that had

> > been fixed. Until about two years ago, when I started getting severe

> > lower back pain constantly. Also I've had pain in my leg, weakness, and

> > sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> > occasional numbness in my fingers and toes, that my neurologist thought

> > may be neuropathy, but tests ruled that out. I have tightness and pain

> > in middle of my back, and neck. I've seen a chiropractor and physical

> > therapist, but these various pains aren't getting better.

> >

> > I was shocked to read about flatback and realise all of this may be

> > related to my harrington rods! Does anyone know any doctors anywhere in

> > the state of Wisconsin that I could start with? Do I need to return to

> > the University Hospital where I had my original spinal fusion?

> >

> > I really appreciate everyone's help and support. Thank you.

> >

>

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Guest guest

Hi -

Did you mean to say first in the " countRy " or " county? " If you meant in the

countRy, I can tell you that is not correct as I also have TWO Harrington Rods

and my original surgery took place in February 1974 in Connecticut. I also can

recall my surgeon stating that although rare, he had done it several times. Just

thought I'd mention that.

D (RI)

>

>

> I'm new to the group and taken the suggestion to read through older

> posts before posting. I did find many inspiring and informative, and

> it's very reassuring to know that I'm not alone in this pain. However,

> I do have a few questions on topics that have been touched on, but I

> haven't seen specific answers to.

>

> Has anyone had surgery for endometriosis and has that helped with lower

> back pain? Has breast reduction surgery made a big difference in the

> pain and does that help long term? Also will surgeons operate on

> someone significantly overweight (230 pounds) and will losing weight

> alone alleviate the pain?

>

> This is my story. I wore a milwaukee brace from age 9 until 13, when my

> doctor said I was growing " too tall " and it wasn't helping anymore, that

> my curves (upper and lower) were getting significantly worse. I'm not

> sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> had a spinal fusion done at the University Hospital in Madison, WI by

> Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> believe he went on to practice at Children's Hospital in Philadelphia.

> I believe I was also one of the first in the country to have two

> harrington rods in my fusion.

>

> I remember at my last post op doctor visit being told to avoid horse

> back riding, skiing, and that I wouldn't need to come back unless I had

> children or a serious car accident. Since neither happened (I was

> pregnant twice but had two early miscarraiges) I never went back except

> in 2003 when I had a TIA (small stroke). At that time they said my

> fusion looked fine.

>

> I realise I have been very lucky, I've had a few bouts with pain (mainly

> from lifting heavy objects) through the years, that would get better

> with rest. I thought of my scoliosis as a childhood problem that had

> been fixed. Until about two years ago, when I started getting severe

> lower back pain constantly. Also I've had pain in my leg, weakness, and

> sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> occasional numbness in my fingers and toes, that my neurologist thought

> may be neuropathy, but tests ruled that out. I have tightness and pain

> in middle of my back, and neck. I've seen a chiropractor and physical

> therapist, but these various pains aren't getting better.

>

> I was shocked to read about flatback and realise all of this may be

> related to my harrington rods! Does anyone know any doctors anywhere in

> the state of Wisconsin that I could start with? Do I need to return to

> the University Hospital where I had my original spinal fusion?

>

> I really appreciate everyone's help and support. Thank you.

>

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Guest guest

My younger sister had surgery in 1971. She had two short rods inserted.

I had one long rod, inserted in 1967.

Debra

cosby@...

Houston, Texas

valerie_delaney wrote:

>

> Hi -

> Did you mean to say first in the " countRy " or " county? " If you meant

> in the countRy, I can tell you that is not correct as I also have TWO

> Harrington Rods and my original surgery took place in February 1974 in

> Connecticut. I also can recall my surgeon stating that although rare,

> he had done it several times. Just thought I'd mention that.

> D (RI)

>

>

> >

> >

> > I'm new to the group and taken the suggestion to read through older

> > posts before posting. I did find many inspiring and informative, and

> > it's very reassuring to know that I'm not alone in this pain. However,

> > I do have a few questions on topics that have been touched on, but I

> > haven't seen specific answers to.

> >

> > Has anyone had surgery for endometriosis and has that helped with lower

> > back pain? Has breast reduction surgery made a big difference in the

> > pain and does that help long term? Also will surgeons operate on

> > someone significantly overweight (230 pounds) and will losing weight

> > alone alleviate the pain?

> >

> > This is my story. I wore a milwaukee brace from age 9 until 13, when my

> > doctor said I was growing " too tall " and it wasn't helping anymore, that

> > my curves (upper and lower) were getting significantly worse. I'm not

> > sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> > had a spinal fusion done at the University Hospital in Madison, WI by

> > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > believe he went on to practice at Children's Hospital in Philadelphia.

> > I believe I was also one of the first in the country to have two

> > harrington rods in my fusion.

> >

> > I remember at my last post op doctor visit being told to avoid horse

> > back riding, skiing, and that I wouldn't need to come back unless I had

> > children or a serious car accident. Since neither happened (I was

> > pregnant twice but had two early miscarraiges) I never went back except

> > in 2003 when I had a TIA (small stroke). At that time they said my

> > fusion looked fine.

> >

> > I realise I have been very lucky, I've had a few bouts with pain (mainly

> > from lifting heavy objects) through the years, that would get better

> > with rest. I thought of my scoliosis as a childhood problem that had

> > been fixed. Until about two years ago, when I started getting severe

> > lower back pain constantly. Also I've had pain in my leg, weakness, and

> > sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> > occasional numbness in my fingers and toes, that my neurologist thought

> > may be neuropathy, but tests ruled that out. I have tightness and pain

> > in middle of my back, and neck. I've seen a chiropractor and physical

> > therapist, but these various pains aren't getting better.

> >

> > I was shocked to read about flatback and realise all of this may be

> > related to my harrington rods! Does anyone know any doctors anywhere in

> > the state of Wisconsin that I could start with? Do I need to return to

> > the University Hospital where I had my original spinal fusion?

> >

> > I really appreciate everyone's help and support. Thank you.

> >

>

>

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Guest guest

txbluebelle wrote:

>

> My surgery was May of 1967. Two long Harrington rods and eleven hooks.

>

> Kathy

>

>

> > > >

> > > >

> > > > I'm new to the group and taken the suggestion to read through older

> > > > posts before posting. I did find many inspiring and informative, and

> > > > it's very reassuring to know that I'm not alone in this pain.

> However,

> > > > I do have a few questions on topics that have been touched on, but I

> > > > haven't seen specific answers to.

> > > >

> > > > Has anyone had surgery for endometriosis and has that helped

> with lower

> > > > back pain? Has breast reduction surgery made a big difference in the

> > > > pain and does that help long term? Also will surgeons operate on

> > > > someone significantly overweight (230 pounds) and will losing weight

> > > > alone alleviate the pain?

> > > >

> > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> when my

> > > > doctor said I was growing " too tall " and it wasn't helping

> anymore, that

> > > > my curves (upper and lower) were getting significantly worse.

> I'm not

> > > > sure of exact numbers but I believe it was over 80 degrees. At

> age 14 I

> > > > had a spinal fusion done at the University Hospital in Madison,

> WI by

> > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > > believe he went on to practice at Children's Hospital in

> Philadelphia.

> > > > I believe I was also one of the first in the country to have two

> > > > harrington rods in my fusion.

> > > >

> > > > I remember at my last post op doctor visit being told to avoid horse

> > > > back riding, skiing, and that I wouldn't need to come back

> unless I had

> > > > children or a serious car accident. Since neither happened (I was

> > > > pregnant twice but had two early miscarraiges) I never went back

> except

> > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > fusion looked fine.

> > > >

> > > > I realise I have been very lucky, I've had a few bouts with pain

> (mainly

> > > > from lifting heavy objects) through the years, that would get better

> > > > with rest. I thought of my scoliosis as a childhood problem that had

> > > > been fixed. Until about two years ago, when I started getting severe

> > > > lower back pain constantly. Also I've had pain in my leg,

> weakness, and

> > > > sciatic nerve, that I attributed to my stroke, but now I wonder.

> I have

> > > > occasional numbness in my fingers and toes, that my neurologist

> thought

> > > > may be neuropathy, but tests ruled that out. I have tightness

> and pain

> > > > in middle of my back, and neck. I've seen a chiropractor and

> physical

> > > > therapist, but these various pains aren't getting better.

> > > >

> > > > I was shocked to read about flatback and realise all of this may be

> > > > related to my harrington rods! Does anyone know any doctors

> anywhere in

> > > > the state of Wisconsin that I could start with? Do I need to

> return to

> > > > the University Hospital where I had my original spinal fusion?

> > > >

> > > > I really appreciate everyone's help and support. Thank you.

> > > >

> > >

> > >

> >

>

>

Kathy,

Were you here in Houston?

Debra

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My surgery was May of 1967. Two long Harrington rods and eleven hooks.

Kathy

> > >

> > >

> > > I'm new to the group and taken the suggestion to read through older

> > > posts before posting. I did find many inspiring and informative, and

> > > it's very reassuring to know that I'm not alone in this pain. However,

> > > I do have a few questions on topics that have been touched on, but I

> > > haven't seen specific answers to.

> > >

> > > Has anyone had surgery for endometriosis and has that helped with lower

> > > back pain? Has breast reduction surgery made a big difference in the

> > > pain and does that help long term? Also will surgeons operate on

> > > someone significantly overweight (230 pounds) and will losing weight

> > > alone alleviate the pain?

> > >

> > > This is my story. I wore a milwaukee brace from age 9 until 13, when my

> > > doctor said I was growing " too tall " and it wasn't helping anymore, that

> > > my curves (upper and lower) were getting significantly worse. I'm not

> > > sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> > > had a spinal fusion done at the University Hospital in Madison, WI by

> > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > believe he went on to practice at Children's Hospital in Philadelphia.

> > > I believe I was also one of the first in the country to have two

> > > harrington rods in my fusion.

> > >

> > > I remember at my last post op doctor visit being told to avoid horse

> > > back riding, skiing, and that I wouldn't need to come back unless I had

> > > children or a serious car accident. Since neither happened (I was

> > > pregnant twice but had two early miscarraiges) I never went back except

> > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > fusion looked fine.

> > >

> > > I realise I have been very lucky, I've had a few bouts with pain (mainly

> > > from lifting heavy objects) through the years, that would get better

> > > with rest. I thought of my scoliosis as a childhood problem that had

> > > been fixed. Until about two years ago, when I started getting severe

> > > lower back pain constantly. Also I've had pain in my leg, weakness, and

> > > sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> > > occasional numbness in my fingers and toes, that my neurologist thought

> > > may be neuropathy, but tests ruled that out. I have tightness and pain

> > > in middle of my back, and neck. I've seen a chiropractor and physical

> > > therapist, but these various pains aren't getting better.

> > >

> > > I was shocked to read about flatback and realise all of this may be

> > > related to my harrington rods! Does anyone know any doctors anywhere in

> > > the state of Wisconsin that I could start with? Do I need to return to

> > > the University Hospital where I had my original spinal fusion?

> > >

> > > I really appreciate everyone's help and support. Thank you.

> > >

> >

> >

>

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Mine was January. 1967. I have one long rod, two short rods

and 14 hooks.

Debbie

From:

[mailto: ] On

Behalf Of txbluebelle

Sent: Thursday, March 11, 2010 10:46 AM

Subject: [ ] Re: A few questions

My surgery was May of 1967. Two long Harrington

rods and eleven hooks.

Kathy

> > >

> > >

> > > I'm new to the group and taken the suggestion to read through

older

> > > posts before posting. I did find many inspiring and informative,

and

> > > it's very reassuring to know that I'm not alone in this pain.

However,

> > > I do have a few questions on topics that have been touched on,

but I

> > > haven't seen specific answers to.

> > >

> > > Has anyone had surgery for endometriosis and has that helped

with lower

> > > back pain? Has breast reduction surgery made a big difference in

the

> > > pain and does that help long term? Also will surgeons operate on

> > > someone significantly overweight (230 pounds) and will losing

weight

> > > alone alleviate the pain?

> > >

> > > This is my story. I wore a milwaukee brace from age 9 until 13,

when my

> > > doctor said I was growing " too tall " and it wasn't

helping anymore, that

> > > my curves (upper and lower) were getting significantly worse.

I'm not

> > > sure of exact numbers but I believe it was over 80 degrees. At

age 14 I

> > > had a spinal fusion done at the University Hospital in Madison,

WI by

> > > Dr. Denis Drummond, in 1980. Has anyone else had him as a

surgeon? I

> > > believe he went on to practice at Children's Hospital in

Philadelphia.

> > > I believe I was also one of the first in the country to have two

> > > harrington rods in my fusion.

> > >

> > > I remember at my last post op doctor visit being told to avoid

horse

> > > back riding, skiing, and that I wouldn't need to come back

unless I had

> > > children or a serious car accident. Since neither happened (I

was

> > > pregnant twice but had two early miscarraiges) I never went back

except

> > > in 2003 when I had a TIA (small stroke). At that time they said

my

> > > fusion looked fine.

> > >

> > > I realise I have been very lucky, I've had a few bouts with pain

(mainly

> > > from lifting heavy objects) through the years, that would get

better

> > > with rest. I thought of my scoliosis as a childhood problem that

had

> > > been fixed. Until about two years ago, when I started getting

severe

> > > lower back pain constantly. Also I've had pain in my leg,

weakness, and

> > > sciatic nerve, that I attributed to my stroke, but now I wonder.

I have

> > > occasional numbness in my fingers and toes, that my neurologist

thought

> > > may be neuropathy, but tests ruled that out. I have tightness

and pain

> > > in middle of my back, and neck. I've seen a chiropractor and

physical

> > > therapist, but these various pains aren't getting better.

> > >

> > > I was shocked to read about flatback and realise all of this may

be

> > > related to my harrington rods! Does anyone know any doctors

anywhere in

> > > the state of Wisconsin that I could start with? Do I need to return

to

> > > the University Hospital where I had my original spinal fusion?

> > >

> > > I really appreciate everyone's help and support. Thank you.

> > >

> >

> >

>

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Guest guest

Hi Everyone,

I realised I forgot to put my name in my original email! It's actually Noreen,

is just my " email " name.

When I had my surgery to my doctor told my parents I was one of the first in the

country have the double rods, which he said would stabilize my spine even more

and make the surgery more successful. Since it was at a University teaching

hospital I had tons of medical students coming in to my room while I was

recovering for two weeks, asking a lot of questions. That made me feel even

more self-conscious, with groups of strangers staring at my scars and asking

questions. I already felt self conscious from wearing the brace for 5 years

previously. I later developed severe anxiety and panic attacks, and I've often

wondered if those experiences had anything to do with it.

But anyway, now I realise my doctor wasn't telling the truth, or maybe it was

just the truth that he knew. I guess it doesn't really matter now, except I

wonder if revision surgery is more complex with two rods vs. one?

Thanks again everyone for their support!

> > > >

> > > >

> > > > I'm new to the group and taken the suggestion to read through

> older

> > > > posts before posting. I did find many inspiring and informative,

> and

> > > > it's very reassuring to know that I'm not alone in this pain.

> However,

> > > > I do have a few questions on topics that have been touched on, but

> I

> > > > haven't seen specific answers to.

> > > >

> > > > Has anyone had surgery for endometriosis and has that helped with

> lower

> > > > back pain? Has breast reduction surgery made a big difference in

> the

> > > > pain and does that help long term? Also will surgeons operate on

> > > > someone significantly overweight (230 pounds) and will losing

> weight

> > > > alone alleviate the pain?

> > > >

> > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> when my

> > > > doctor said I was growing " too tall " and it wasn't helping

> anymore, that

> > > > my curves (upper and lower) were getting significantly worse. I'm

> not

> > > > sure of exact numbers but I believe it was over 80 degrees. At age

> 14 I

> > > > had a spinal fusion done at the University Hospital in Madison, WI

> by

> > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon?

> I

> > > > believe he went on to practice at Children's Hospital in

> Philadelphia.

> > > > I believe I was also one of the first in the country to have two

> > > > harrington rods in my fusion.

> > > >

> > > > I remember at my last post op doctor visit being told to avoid

> horse

> > > > back riding, skiing, and that I wouldn't need to come back unless

> I had

> > > > children or a serious car accident. Since neither happened (I was

> > > > pregnant twice but had two early miscarraiges) I never went back

> except

> > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > fusion looked fine.

> > > >

> > > > I realise I have been very lucky, I've had a few bouts with pain

> (mainly

> > > > from lifting heavy objects) through the years, that would get

> better

> > > > with rest. I thought of my scoliosis as a childhood problem that

> had

> > > > been fixed. Until about two years ago, when I started getting

> severe

> > > > lower back pain constantly. Also I've had pain in my leg,

> weakness, and

> > > > sciatic nerve, that I attributed to my stroke, but now I wonder. I

> have

> > > > occasional numbness in my fingers and toes, that my neurologist

> thought

> > > > may be neuropathy, but tests ruled that out. I have tightness and

> pain

> > > > in middle of my back, and neck. I've seen a chiropractor and

> physical

> > > > therapist, but these various pains aren't getting better.

> > > >

> > > > I was shocked to read about flatback and realise all of this may

> be

> > > > related to my harrington rods! Does anyone know any doctors

> anywhere in

> > > > the state of Wisconsin that I could start with? Do I need to

> return to

> > > > the University Hospital where I had my original spinal fusion?

> > > >

> > > > I really appreciate everyone's help and support. Thank you.

> > > >

> > >

> > >

> >

>

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Guest guest

Hi,

 

Not sure how to answer you're email however you have me thinking now....If two bars is considered a lot, I had my surgery in 1986 and I have three.  When I do revision surgery, they will remove the bottom one and replace that with wedges and the " newer " more " flexible " bar. 

 

Debbie

On Thu, Mar 11, 2010 at 1:44 PM, nicole24wi <nannynoreen66@...> wrote:

 

Hi Everyone,I realised I forgot to put my name in my original email! It's actually Noreen, is just my " email " name. When I had my surgery to my doctor told my parents I was one of the first in the country have the double rods, which he said would stabilize my spine even more and make the surgery more successful. Since it was at a University teaching hospital I had tons of medical students coming in to my room while I was recovering for two weeks, asking a lot of questions. That made me feel even more self-conscious, with groups of strangers staring at my scars and asking questions. I already felt self conscious from wearing the brace for 5 years previously. I later developed severe anxiety and panic attacks, and I've often wondered if those experiences had anything to do with it.

But anyway, now I realise my doctor wasn't telling the truth, or maybe it was just the truth that he knew. I guess it doesn't really matter now, except I wonder if revision surgery is more complex with two rods vs. one?

Thanks again everyone for their support!> > > >> > > >> > > > I'm new to the group and taken the suggestion to read through> older> > > > posts before posting. I did find many inspiring and informative,

> and> > > > it's very reassuring to know that I'm not alone in this pain.> However,> > > > I do have a few questions on topics that have been touched on, but> I

> > > > haven't seen specific answers to.> > > >> > > > Has anyone had surgery for endometriosis and has that helped with> lower> > > > back pain? Has breast reduction surgery made a big difference in

> the> > > > pain and does that help long term? Also will surgeons operate on> > > > someone significantly overweight (230 pounds) and will losing> weight> > > > alone alleviate the pain?

> > > >> > > > This is my story. I wore a milwaukee brace from age 9 until 13,> when my> > > > doctor said I was growing " too tall " and it wasn't helping

> anymore, that> > > > my curves (upper and lower) were getting significantly worse. I'm> not> > > > sure of exact numbers but I believe it was over 80 degrees. At age> 14 I

> > > > had a spinal fusion done at the University Hospital in Madison, WI> by> > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon?> I> > > > believe he went on to practice at Children's Hospital in

> Philadelphia.> > > > I believe I was also one of the first in the country to have two> > > > harrington rods in my fusion.> > > >> > > > I remember at my last post op doctor visit being told to avoid

> horse> > > > back riding, skiing, and that I wouldn't need to come back unless> I had> > > > children or a serious car accident. Since neither happened (I was> > > > pregnant twice but had two early miscarraiges) I never went back

> except> > > > in 2003 when I had a TIA (small stroke). At that time they said my> > > > fusion looked fine.> > > >> > > > I realise I have been very lucky, I've had a few bouts with pain

> (mainly> > > > from lifting heavy objects) through the years, that would get> better> > > > with rest. I thought of my scoliosis as a childhood problem that> had> > > > been fixed. Until about two years ago, when I started getting

> severe> > > > lower back pain constantly. Also I've had pain in my leg,> weakness, and> > > > sciatic nerve, that I attributed to my stroke, but now I wonder. I> have

> > > > occasional numbness in my fingers and toes, that my neurologist> thought> > > > may be neuropathy, but tests ruled that out. I have tightness and> pain> > > > in middle of my back, and neck. I've seen a chiropractor and

> physical> > > > therapist, but these various pains aren't getting better.> > > >> > > > I was shocked to read about flatback and realise all of this may> be

> > > > related to my harrington rods! Does anyone know any doctors> anywhere in> > > > the state of Wisconsin that I could start with? Do I need to> return to> > > > the University Hospital where I had my original spinal fusion?

> > > >> > > > I really appreciate everyone's help and support. Thank you.> > > >> > >> > >> >>

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Guest guest

I had surgery in Houston and live there now, but didn't live in Houston at the

time of the surgery.

> > > > >

> > > > >

> > > > > I'm new to the group and taken the suggestion to read through older

> > > > > posts before posting. I did find many inspiring and informative, and

> > > > > it's very reassuring to know that I'm not alone in this pain.

> > However,

> > > > > I do have a few questions on topics that have been touched on, but I

> > > > > haven't seen specific answers to.

> > > > >

> > > > > Has anyone had surgery for endometriosis and has that helped

> > with lower

> > > > > back pain? Has breast reduction surgery made a big difference in the

> > > > > pain and does that help long term? Also will surgeons operate on

> > > > > someone significantly overweight (230 pounds) and will losing weight

> > > > > alone alleviate the pain?

> > > > >

> > > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> > when my

> > > > > doctor said I was growing " too tall " and it wasn't helping

> > anymore, that

> > > > > my curves (upper and lower) were getting significantly worse.

> > I'm not

> > > > > sure of exact numbers but I believe it was over 80 degrees. At

> > age 14 I

> > > > > had a spinal fusion done at the University Hospital in Madison,

> > WI by

> > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > > > believe he went on to practice at Children's Hospital in

> > Philadelphia.

> > > > > I believe I was also one of the first in the country to have two

> > > > > harrington rods in my fusion.

> > > > >

> > > > > I remember at my last post op doctor visit being told to avoid horse

> > > > > back riding, skiing, and that I wouldn't need to come back

> > unless I had

> > > > > children or a serious car accident. Since neither happened (I was

> > > > > pregnant twice but had two early miscarraiges) I never went back

> > except

> > > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > > fusion looked fine.

> > > > >

> > > > > I realise I have been very lucky, I've had a few bouts with pain

> > (mainly

> > > > > from lifting heavy objects) through the years, that would get better

> > > > > with rest. I thought of my scoliosis as a childhood problem that had

> > > > > been fixed. Until about two years ago, when I started getting severe

> > > > > lower back pain constantly. Also I've had pain in my leg,

> > weakness, and

> > > > > sciatic nerve, that I attributed to my stroke, but now I wonder.

> > I have

> > > > > occasional numbness in my fingers and toes, that my neurologist

> > thought

> > > > > may be neuropathy, but tests ruled that out. I have tightness

> > and pain

> > > > > in middle of my back, and neck. I've seen a chiropractor and

> > physical

> > > > > therapist, but these various pains aren't getting better.

> > > > >

> > > > > I was shocked to read about flatback and realise all of this may be

> > > > > related to my harrington rods! Does anyone know any doctors

> > anywhere in

> > > > > the state of Wisconsin that I could start with? Do I need to

> > return to

> > > > > the University Hospital where I had my original spinal fusion?

> > > > >

> > > > > I really appreciate everyone's help and support. Thank you.

> > > > >

> > > >

> > > >

> > >

> >

> >

> Kathy,

>

> Were you here in Houston?

>

> Debra

>

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Hi Debbie,

I don't know if two bars are considered a lot nowdays. It sounds like the

doctors doing your revision surgery know what they are doing and are aware of

your situation. I think it's great that they

have a " flexible " bar now and more options than they did for us back in the

1980's!

Good luck and take care,

Noreen

> > > > > >

> > > > > >

> > > > > > I'm new to the group and taken the suggestion to read through

> > > older

> > > > > > posts before posting. I did find many inspiring and informative,

> > > and

> > > > > > it's very reassuring to know that I'm not alone in this pain.

> > > However,

> > > > > > I do have a few questions on topics that have been touched on, but

> > > I

> > > > > > haven't seen specific answers to.

> > > > > >

> > > > > > Has anyone had surgery for endometriosis and has that helped with

> > > lower

> > > > > > back pain? Has breast reduction surgery made a big difference in

> > > the

> > > > > > pain and does that help long term? Also will surgeons operate on

> > > > > > someone significantly overweight (230 pounds) and will losing

> > > weight

> > > > > > alone alleviate the pain?

> > > > > >

> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> > > when my

> > > > > > doctor said I was growing " too tall " and it wasn't helping

> > > anymore, that

> > > > > > my curves (upper and lower) were getting significantly worse. I'm

> > > not

> > > > > > sure of exact numbers but I believe it was over 80 degrees. At age

> > > 14 I

> > > > > > had a spinal fusion done at the University Hospital in Madison, WI

> > > by

> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon?

> > > I

> > > > > > believe he went on to practice at Children's Hospital in

> > > Philadelphia.

> > > > > > I believe I was also one of the first in the country to have two

> > > > > > harrington rods in my fusion.

> > > > > >

> > > > > > I remember at my last post op doctor visit being told to avoid

> > > horse

> > > > > > back riding, skiing, and that I wouldn't need to come back unless

> > > I had

> > > > > > children or a serious car accident. Since neither happened (I was

> > > > > > pregnant twice but had two early miscarraiges) I never went back

> > > except

> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > > > fusion looked fine.

> > > > > >

> > > > > > I realise I have been very lucky, I've had a few bouts with pain

> > > (mainly

> > > > > > from lifting heavy objects) through the years, that would get

> > > better

> > > > > > with rest. I thought of my scoliosis as a childhood problem that

> > > had

> > > > > > been fixed. Until about two years ago, when I started getting

> > > severe

> > > > > > lower back pain constantly. Also I've had pain in my leg,

> > > weakness, and

> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder. I

> > > have

> > > > > > occasional numbness in my fingers and toes, that my neurologist

> > > thought

> > > > > > may be neuropathy, but tests ruled that out. I have tightness and

> > > pain

> > > > > > in middle of my back, and neck. I've seen a chiropractor and

> > > physical

> > > > > > therapist, but these various pains aren't getting better.

> > > > > >

> > > > > > I was shocked to read about flatback and realise all of this may

> > > be

> > > > > > related to my harrington rods! Does anyone know any doctors

> > > anywhere in

> > > > > > the state of Wisconsin that I could start with? Do I need to

> > > return to

> > > > > > the University Hospital where I had my original spinal fusion?

> > > > > >

> > > > > > I really appreciate everyone's help and support. Thank you.

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

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Hi Noreen!

Here is the contact info for Northwestern: 312/695-8143. Most likely you will

speak to someone who will tell you that it is 3-6 months wait time to get in to

see Dr Koski. They will also ask if you have any recent films (x-ray, CT, MRI,

etc) or film reports that you could send/fax in. I didn't have anything recent

that I could easily send in, so I went to my local PCP and asked to get a

scoliosis set of films done. It was pretty much a worthless set of films,

because they don't take them of the quality necessary, but it does give you an

x-ray report that you can fax in. I wrote a letter and faxed it in with the

report - explaining briefly my surgical background and my current symptoms.

After faxing in my info, they called me back withing 2-3 days, and I had an

appointment less than 2 weeks later. I understand that they are busier now, so

it would like be more like 4-6 weeks (or more if they're super busy now). But

it gets you scheduled in to their special spine program, rather than their

regular " aches & pains " group of people who have to wait longer to be seen. So,

if things are working the same way that they did when I started seeing them, you

can call the phone number I gave you, get the fax info, send in your

reports/letter, and then they'll review it and call you back with an

appointment. Otherwise you can just try to schedule an appt and see how long it

takes you to get in.

I was born in Appleton, and lived the first year of my life in Little Chute, and

then my parents moved to northern Illinois :) Buffalo Grove is fairly close -

about 40 minutes or so from where I'm at.

Out of curiosity, have you ever had a doctor look into the possibility of

Syndrome (aka antiphospholipid syndrome - APS)? You have mentioned a few things

that I know can be associated with that - miscarriages, stroke, and headaches.

I'm obviously no medical professional, but some people with this are

accidentally diagnosed as having MS, so I've looked at info about it while

helping out on MS support groups - and you sounded like you might have matched

some of the descriptions. Of course, there are many health conditions that

mimic other things, so maybe I'm way off in even suggesting it! Here is a

webpage about it if you would like to read about it:

http://www.hughes-syndrome.org/symptoms.htm

Good luck with finding more help with your spinal problems! I really liked Dr

Koski a lot. He spent at least an hour talking with me during several of my

appts, and I never felt rushed or like I was just a number. He also wrote very

detailed, extensive letters to my PCP and neurologist so that they were in the

loop and could help coordinate my care. I hope you would find the same positive

experience if you consult with them!

> > >

> > >

> > > I'm new to the group and taken the suggestion to read through older

> > > posts before posting. I did find many inspiring and informative, and

> > > it's very reassuring to know that I'm not alone in this pain. However,

> > > I do have a few questions on topics that have been touched on, but I

> > > haven't seen specific answers to.

> > >

> > > Has anyone had surgery for endometriosis and has that helped with lower

> > > back pain? Has breast reduction surgery made a big difference in the

> > > pain and does that help long term? Also will surgeons operate on

> > > someone significantly overweight (230 pounds) and will losing weight

> > > alone alleviate the pain?

> > >

> > > This is my story. I wore a milwaukee brace from age 9 until 13, when my

> > > doctor said I was growing " too tall " and it wasn't helping anymore, that

> > > my curves (upper and lower) were getting significantly worse. I'm not

> > > sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> > > had a spinal fusion done at the University Hospital in Madison, WI by

> > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > believe he went on to practice at Children's Hospital in Philadelphia.

> > > I believe I was also one of the first in the country to have two

> > > harrington rods in my fusion.

> > >

> > > I remember at my last post op doctor visit being told to avoid horse

> > > back riding, skiing, and that I wouldn't need to come back unless I had

> > > children or a serious car accident. Since neither happened (I was

> > > pregnant twice but had two early miscarraiges) I never went back except

> > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > fusion looked fine.

> > >

> > > I realise I have been very lucky, I've had a few bouts with pain (mainly

> > > from lifting heavy objects) through the years, that would get better

> > > with rest. I thought of my scoliosis as a childhood problem that had

> > > been fixed. Until about two years ago, when I started getting severe

> > > lower back pain constantly. Also I've had pain in my leg, weakness, and

> > > sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> > > occasional numbness in my fingers and toes, that my neurologist thought

> > > may be neuropathy, but tests ruled that out. I have tightness and pain

> > > in middle of my back, and neck. I've seen a chiropractor and physical

> > > therapist, but these various pains aren't getting better.

> > >

> > > I was shocked to read about flatback and realise all of this may be

> > > related to my harrington rods! Does anyone know any doctors anywhere in

> > > the state of Wisconsin that I could start with? Do I need to return to

> > > the University Hospital where I had my original spinal fusion?

> > >

> > > I really appreciate everyone's help and support. Thank you.

> > >

> >

>

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Hi, I just thought I would mention that I had a bilateral breast reduction in

1983. At the time, it was to hopefully alleviate pain that I was having in my

neck and upper spine. Prior to the reduction, I had surgery in 1976 to fuse T-5

through L-4 to reduce a 65 degree " S " curve scoliosis to 45 degrees. The breast

reduction, in my opinion, successfullu alleviated much neck and upper back pain.

Good luck in your search for answers, Robin

>

>

> I'm new to the group and taken the suggestion to read through older

> posts before posting. I did find many inspiring and informative, and

> it's very reassuring to know that I'm not alone in this pain. However,

> I do have a few questions on topics that have been touched on, but I

> haven't seen specific answers to.

>

> Has anyone had surgery for endometriosis and has that helped with lower

> back pain? Has breast reduction surgery made a big difference in the

> pain and does that help long term? Also will surgeons operate on

> someone significantly overweight (230 pounds) and will losing weight

> alone alleviate the pain?

>

> This is my story. I wore a milwaukee brace from age 9 until 13, when my

> doctor said I was growing " too tall " and it wasn't helping anymore, that

> my curves (upper and lower) were getting significantly worse. I'm not

> sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> had a spinal fusion done at the University Hospital in Madison, WI by

> Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> believe he went on to practice at Children's Hospital in Philadelphia.

> I believe I was also one of the first in the country to have two

> harrington rods in my fusion.

>

> I remember at my last post op doctor visit being told to avoid horse

> back riding, skiing, and that I wouldn't need to come back unless I had

> children or a serious car accident. Since neither happened (I was

> pregnant twice but had two early miscarraiges) I never went back except

> in 2003 when I had a TIA (small stroke). At that time they said my

> fusion looked fine.

>

> I realise I have been very lucky, I've had a few bouts with pain (mainly

> from lifting heavy objects) through the years, that would get better

> with rest. I thought of my scoliosis as a childhood problem that had

> been fixed. Until about two years ago, when I started getting severe

> lower back pain constantly. Also I've had pain in my leg, weakness, and

> sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> occasional numbness in my fingers and toes, that my neurologist thought

> may be neuropathy, but tests ruled that out. I have tightness and pain

> in middle of my back, and neck. I've seen a chiropractor and physical

> therapist, but these various pains aren't getting better.

>

> I was shocked to read about flatback and realise all of this may be

> related to my harrington rods! Does anyone know any doctors anywhere in

> the state of Wisconsin that I could start with? Do I need to return to

> the University Hospital where I had my original spinal fusion?

>

> I really appreciate everyone's help and support. Thank you.

>

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Guest guest

Flexible? I hope not. You'd never fuse.

>

> Hi,

>

> Not sure how to answer you're email however you have me thinking now....If

> two bars is considered a lot, I had my surgery in 1986 and I have three.

> When I do revision surgery, they will remove the bottom one and replace that

> with wedges and the " newer " more " flexible " bar.

>

> Debbie

>

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Guest guest

It just dawned on me that the surgeon meant flexible in terms of there being

more options.

> >

> > Hi,

> >

> > Not sure how to answer you're email however you have me thinking now....If

> > two bars is considered a lot, I had my surgery in 1986 and I have three.

> > When I do revision surgery, they will remove the bottom one and replace that

> > with wedges and the " newer " more " flexible " bar.

> >

> > Debbie

> >

>

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Guest guest

It just dawned on me that the surgeon meant flexible in terms of there being

more options.

> >

> > Hi,

> >

> > Not sure how to answer you're email however you have me thinking now....If

> > two bars is considered a lot, I had my surgery in 1986 and I have three.

> > When I do revision surgery, they will remove the bottom one and replace that

> > with wedges and the " newer " more " flexible " bar.

> >

> > Debbie

> >

>

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Guest guest

Hi ,

 

I may have the term " flexible " incorrect.  It has been a couple years since I spoke with my doctors about revision.  However, I do remember them showing me the new material that would replace the one Harrington rod and it was not rigid, like the harrington.  It was still some sort of metal however supposedly allows the lower spine to have more motion.  That is really all I can remember.  When the time comes to actually do the revision I'll make sure to get much more info (of course)

 

Debbie

On Fri, Mar 12, 2010 at 10:34 PM, <linda.racine@...> wrote:

 

It just dawned on me that the surgeon meant flexible in terms of there being more options.

> >> > Hi,> > > > Not sure how to answer you're email however you have me thinking now....If

> > two bars is considered a lot, I had my surgery in 1986 and I have three.> > When I do revision surgery, they will remove the bottom one and replace that> > with wedges and the " newer " more " flexible " bar.

> > > > Debbie> >>

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Hi,Kathy.

I had surgery in Houston with Dr. Harrington as my doctor in June 1963. I had

curvatures of 60* and 56*: had 1 long rod and 2 shorter rods and a bunch of

hooks (11 I think)from T5 through L4.

I will be having flatback revision surgery with Dr. LaGrone in Amarillo June 7.

He will remove all the hardware, repair pseudarthroses (long rod broke at T11),

osteotomies, extend fusion to the sacrum with re-instrumentation of spine using

segmental implants, plus remove 2 disks and put in " cages " ....? I'm still

learning about that part.

At 63, I can't say I'm looking forward to this, but if it helps me and lasts as

long as the FIRST surgery....well, I'll be happy. I had 2 children (labor for 3

hours for 1st; 30 min. for 2nd), built rooms, fireplaces, gardened and, in

general, have had a very active life. The last 2 or 3 years have seen some

major changes. Lower back and left hip & leg burning, stinging, numbness and

has become progressively worse. I retired last June from teaching(in part

because I couldn't stand more than a few minutes without burning). I am no

doctor, but I've never had problems with endometriosis and the burning in my

lower back has made me sit down in the middle of my yard rather than finish the

short walk back to my house!

I have been blessed with my father's genetics...everyone in his extended family

was tall and fairly slim-built...so I don't know how weight affects or if it

affects the level of pain. I have begun gaining weight as my ability to

maintain my level of activity has decreased! I am about 20-30 pounds over, but

I sympatize with anyone who has had that battle! I can't diet for love or

money! It's a " catch-22 " situation; the more I hurt the less I do and the less

I do, the more I hurt!

I would love to hear from anyone who had Dr. LaGrone as their doctor. I was

going to use someone in Houston, but backed out. I just never felt the degree

of confidence in him that I needed.

Janell

PS Hi to Debra!...I'm still here!

> > > > > >

> > > > > >

> > > > > > I'm new to the group and taken the suggestion to read through older

> > > > > > posts before posting. I did find many inspiring and informative, and

> > > > > > it's very reassuring to know that I'm not alone in this pain.

> > > However,

> > > > > > I do have a few questions on topics that have been touched on, but I

> > > > > > haven't seen specific answers to.

> > > > > >

> > > > > > Has anyone had surgery for endometriosis and has that helped

> > > with lower

> > > > > > back pain? Has breast reduction surgery made a big difference in the

> > > > > > pain and does that help long term? Also will surgeons operate on

> > > > > > someone significantly overweight (230 pounds) and will losing weight

> > > > > > alone alleviate the pain?

> > > > > >

> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> > > when my

> > > > > > doctor said I was growing " too tall " and it wasn't helping

> > > anymore, that

> > > > > > my curves (upper and lower) were getting significantly worse.

> > > I'm not

> > > > > > sure of exact numbers but I believe it was over 80 degrees. At

> > > age 14 I

> > > > > > had a spinal fusion done at the University Hospital in Madison,

> > > WI by

> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > > > > believe he went on to practice at Children's Hospital in

> > > Philadelphia.

> > > > > > I believe I was also one of the first in the country to have two

> > > > > > harrington rods in my fusion.

> > > > > >

> > > > > > I remember at my last post op doctor visit being told to avoid horse

> > > > > > back riding, skiing, and that I wouldn't need to come back

> > > unless I had

> > > > > > children or a serious car accident. Since neither happened (I was

> > > > > > pregnant twice but had two early miscarraiges) I never went back

> > > except

> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > > > fusion looked fine.

> > > > > >

> > > > > > I realise I have been very lucky, I've had a few bouts with pain

> > > (mainly

> > > > > > from lifting heavy objects) through the years, that would get better

> > > > > > with rest. I thought of my scoliosis as a childhood problem that had

> > > > > > been fixed. Until about two years ago, when I started getting severe

> > > > > > lower back pain constantly. Also I've had pain in my leg,

> > > weakness, and

> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder.

> > > I have

> > > > > > occasional numbness in my fingers and toes, that my neurologist

> > > thought

> > > > > > may be neuropathy, but tests ruled that out. I have tightness

> > > and pain

> > > > > > in middle of my back, and neck. I've seen a chiropractor and

> > > physical

> > > > > > therapist, but these various pains aren't getting better.

> > > > > >

> > > > > > I was shocked to read about flatback and realise all of this may be

> > > > > > related to my harrington rods! Does anyone know any doctors

> > > anywhere in

> > > > > > the state of Wisconsin that I could start with? Do I need to

> > > return to

> > > > > > the University Hospital where I had my original spinal fusion?

> > > > > >

> > > > > > I really appreciate everyone's help and support. Thank you.

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> > Kathy,

> >

> > Were you here in Houston?

> >

> > Debra

> >

>

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Guest guest

Hi Jannell,

Good luck with your revision surgery! I certainly hope it will help with your

pain.

Thank you for sympathizing with the weight battle, I think even 20 or 30 pounds

can make a difference.

My Mom also has scoliosis, although not as severe as mine. Your story reminded

me of her. She never had surgery, and she also was extremely active. She loves

her gardens, lifted wheelbarrows full of heavy dirt, wallpapered and painted

houses, etc. In the past few years she has had to cut way back due to a lot of

lower back pain. She's gone to physical therapy which seemed to help for a

while.

Do you think they would operate on someone who never had a fusion in the first

place? She's almost 72 years old.

Take care,

Noreen

> > > > > > >

> > > > > > >

> > > > > > > I'm new to the group and taken the suggestion to read through

older

> > > > > > > posts before posting. I did find many inspiring and informative,

and

> > > > > > > it's very reassuring to know that I'm not alone in this pain.

> > > > However,

> > > > > > > I do have a few questions on topics that have been touched on, but

I

> > > > > > > haven't seen specific answers to.

> > > > > > >

> > > > > > > Has anyone had surgery for endometriosis and has that helped

> > > > with lower

> > > > > > > back pain? Has breast reduction surgery made a big difference in

the

> > > > > > > pain and does that help long term? Also will surgeons operate on

> > > > > > > someone significantly overweight (230 pounds) and will losing

weight

> > > > > > > alone alleviate the pain?

> > > > > > >

> > > > > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> > > > when my

> > > > > > > doctor said I was growing " too tall " and it wasn't helping

> > > > anymore, that

> > > > > > > my curves (upper and lower) were getting significantly worse.

> > > > I'm not

> > > > > > > sure of exact numbers but I believe it was over 80 degrees. At

> > > > age 14 I

> > > > > > > had a spinal fusion done at the University Hospital in Madison,

> > > > WI by

> > > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon?

I

> > > > > > > believe he went on to practice at Children's Hospital in

> > > > Philadelphia.

> > > > > > > I believe I was also one of the first in the country to have two

> > > > > > > harrington rods in my fusion.

> > > > > > >

> > > > > > > I remember at my last post op doctor visit being told to avoid

horse

> > > > > > > back riding, skiing, and that I wouldn't need to come back

> > > > unless I had

> > > > > > > children or a serious car accident. Since neither happened (I was

> > > > > > > pregnant twice but had two early miscarraiges) I never went back

> > > > except

> > > > > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > > > > fusion looked fine.

> > > > > > >

> > > > > > > I realise I have been very lucky, I've had a few bouts with pain

> > > > (mainly

> > > > > > > from lifting heavy objects) through the years, that would get

better

> > > > > > > with rest. I thought of my scoliosis as a childhood problem that

had

> > > > > > > been fixed. Until about two years ago, when I started getting

severe

> > > > > > > lower back pain constantly. Also I've had pain in my leg,

> > > > weakness, and

> > > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder.

> > > > I have

> > > > > > > occasional numbness in my fingers and toes, that my neurologist

> > > > thought

> > > > > > > may be neuropathy, but tests ruled that out. I have tightness

> > > > and pain

> > > > > > > in middle of my back, and neck. I've seen a chiropractor and

> > > > physical

> > > > > > > therapist, but these various pains aren't getting better.

> > > > > > >

> > > > > > > I was shocked to read about flatback and realise all of this may

be

> > > > > > > related to my harrington rods! Does anyone know any doctors

> > > > anywhere in

> > > > > > > the state of Wisconsin that I could start with? Do I need to

> > > > return to

> > > > > > > the University Hospital where I had my original spinal fusion?

> > > > > > >

> > > > > > > I really appreciate everyone's help and support. Thank you.

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > Kathy,

> > >

> > > Were you here in Houston?

> > >

> > > Debra

> > >

> >

>

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Share on other sites

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Hi JanellMy name is Alvera White....live in Guymon OK. Presently in Houston for a week...What brings me here is a daughter in Sugar Land and appointments with MD cancer center. Meet with my oncologist tomorrow. Nearly 5 years ago cancer was discovered in both breast. I'm on a 5yr adjuvant treatment. Have been seeing Dr. LaGrone for several years....and will see him on 24th of this month. Starting to do some ground work for a surgery in the fall. He does not prefer to do anywork until I have cancer medicaton out of my system...Presently I'm icing my neck and back. Terrific pain. Have darvacet...but shy away from as much drug as I can. I'm starting to meet some very nice, sweet, honest ladies that have the same problem we fight.Wish I could meet you. According to your surgery description It sound the very same for me..although I don't know if he mentioned the cage. I only have one rod and it has done it's job very well. Been in for 24 years. I have been active and still mow and take on whatever challenge I can. In fact I am pleased to say my daughters tell me I can work circles around them.Here is my cell number if you would like to call me. I'm single...and have the time.281-684-8448.May God Bless you and I feel like you have one of the top doctors....there are several as you go further north and east....but for mid-west he is a God-send.Sincerely,Alvera White

Hi,Kathy.I had surgery in Houston with Dr. Harrington as my doctor in June 1963. I had curvatures of 60* and 56*: had 1 long rod and 2 shorter rods and a bunch of hooks (11 I think)from T5 through L4.I will be having flatback revision surgery with Dr. LaGrone in Amarillo June 7. He will remove all the hardware, repair pseudarthroses (long rod broke at T11), osteotomies, extend fusion to the sacrum with re-instrumentation of spine using segmental implants, plus remove 2 disks and put in "cages"....? I'm still learning about that part.At 63, I can't say I'm looking forward to this, but if it helps me and lasts as long as the FIRST surgery....well, I'll be happy. I had 2 children (labor for 3 hours for 1st; 30 min. for 2nd), built rooms, fireplaces, gardened and, in general, have had a very active life. The last 2 or 3 years have seen some major changes. Lower back and left hip & leg burning, stinging, numbness and has become progressively worse. I retired last June from teaching(in part because I couldn't stand more than a few minutes without burning). I am no doctor, but I've never had problems with endometriosis and the burning in my lower back has made me sit down in the middle of my yard rather than finish the short walk back to my house!I have been blessed with my father's genetics...everyone in his extended family was tall and fairly slim-built...so I don't know how weight affects or if it affects the level of pain. I have begun gaining weight as my ability to maintain my level of activity has decreased! I am about 20-30 pounds over, but I sympatize with anyone who has had that battle! I can't diet for love or money! It's a "catch-22" situation; the more I hurt the less I do and the less I do, the more I hurt!I would love to hear from anyone who had Dr. LaGrone as their doctor. I was going to use someone in Houston, but backed out. I just never felt the degree of confidence in him that I needed.JanellPS Hi to Debra!...I'm still here!> > > > > >> > > > > >> > > > > > I'm new to the group and taken the suggestion to read through older> > > > > > posts before posting. I did find many inspiring and informative, and> > > > > > it's very reassuring to know that I'm not alone in this pain. > > > However,> > > > > > I do have a few questions on topics that have been touched on, but I> > > > > > haven't seen specific answers to.> > > > > >> > > > > > Has anyone had surgery for endometriosis and has that helped > > > with lower> > > > > > back pain? Has breast reduction surgery made a big difference in the> > > > > > pain and does that help long term? Also will surgeons operate on> > > > > > someone significantly overweight (230 pounds) and will losing weight> > > > > > alone alleviate the pain?> > > > > >> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13, > > > when my> > > > > > doctor said I was growing "too tall" and it wasn't helping > > > anymore, that> > > > > > my curves (upper and lower) were getting significantly worse. > > > I'm not> > > > > > sure of exact numbers but I believe it was over 80 degrees. At > > > age 14 I> > > > > > had a spinal fusion done at the University Hospital in Madison, > > > WI by> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I> > > > > > believe he went on to practice at Children's Hospital in > > > Philadelphia.> > > > > > I believe I was also one of the first in the country to have two> > > > > > harrington rods in my fusion.> > > > > >> > > > > > I remember at my last post op doctor visit being told to avoid horse> > > > > > back riding, skiing, and that I wouldn't need to come back > > > unless I had> > > > > > children or a serious car accident. Since neither happened (I was> > > > > > pregnant twice but had two early miscarraiges) I never went back > > > except> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my> > > > > > fusion looked fine.> > > > > >> > > > > > I realise I have been very lucky, I've had a few bouts with pain > > > (mainly> > > > > > from lifting heavy objects) through the years, that would get better> > > > > > with rest. I thought of my scoliosis as a childhood problem that had> > > > > > been fixed. Until about two years ago, when I started getting severe> > > > > > lower back pain constantly. Also I've had pain in my leg, > > > weakness, and> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder. > > > I have> > > > > > occasional numbness in my fingers and toes, that my neurologist > > > thought> > > > > > may be neuropathy, but tests ruled that out. I have tightness > > > and pain> > > > > > in middle of my back, and neck. I've seen a chiropractor and > > > physical> > > > > > therapist, but these various pains aren't getting better.> > > > > >> > > > > > I was shocked to read about flatback and realise all of this may be> > > > > > related to my harrington rods! Does anyone know any doctors > > > anywhere in> > > > > > the state of Wisconsin that I could start with? Do I need to > > > return to> > > > > > the University Hospital where I had my original spinal fusion?> > > > > >> > > > > > I really appreciate everyone's help and support. Thank you.> > > > > >> > > > >> > > > >> > > >> > >> > > > > Kathy,> > > > Were you here in Houston?> > > > Debra> >>

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Alvera,

I'd like to caution you and others about putting phone #'s on postings that go to the group. You have to remember that this is a public forum, people do have to join, but that doesn't mean that they share our malady, and may be here to glean info, besides about scoliosis. I'd err on the side of caution, keep private info private, and if you'd like to exchange numbers, do it through private e-mails. To our knowledge we haven't had any problems with this, but given the world such as it is, I'd play it safe.

Colorado Springs

re: [ ] Re: A few questions

Hi JanellMy name is Alvera White....live in Guymon OK. Presently in Houston for a week...What brings me here is a daughter in Sugar Land and appointments with MD cancer center. Meet with my oncologist tomorrow. Nearly 5 years ago cancer was discovered in both breast. I'm on a 5yr adjuvant treatment. Have been seeing Dr. LaGrone for several years....and will see him on 24th of this month. Starting to do some ground work for a surgery in the fall. He does not prefer to do anywork until I have cancer medicaton out of my system...Presently I'm icing my neck and back. Terrific pain. Have darvacet...but shy away from as much drug as I can. I'm starting to meet some very nice, sweet, honest ladies that have the same problem we fight.Wish I could meet you. According to your surgery description It sound the very same for me..although I don't know if he mentioned the cage. I only have one rod and it has done it's job very well. Been in for 24 years. I have been active and still mow and take on whatever challenge I can. In fact I am pleased to say my daughters tell me I can work circles around them.Here is my cell number if you would like to call me. I'm single...and have the time.281-684-8448.May God Bless you and I feel like you have one of the top doctors....there are several as you go further north and east....but for mid-west he is a God-send.Sincerely,Alvera White

Hi,Kathy.I had surgery in Houston with Dr. Harrington as my doctor in June 1963. I had curvatures of 60* and 56*: had 1 long rod and 2 shorter rods and a bunch of hooks (11 I think)from T5 through L4.I will be having flatback revision surgery with Dr. LaGrone in Amarillo June 7. He will remove all the hardware, repair pseudarthroses (long rod broke at T11), osteotomies, extend fusion to the sacrum with re-instrumentation of spine using segmental implants, plus remove 2 disks and put in "cages"....? I'm still learning about that part.At 63, I can't say I'm looking forward to this, but if it helps me and lasts as long as the FIRST surgery....well, I'll be happy. I had 2 children (labor for 3 hours for 1st; 30 min. for 2nd), built rooms, fireplaces, gardened and, in general, have had a very active life. The last 2 or 3 years have seen some major changes. Lower back and left hip & leg burning, stinging, numbness and has become progressively worse. I retired last June from teaching(in part because I couldn't stand more than a few minutes without burning). I am no doctor, but I've never had problems with endometriosis and the burning in my lower back has made me sit down in the middle of my yard rather than finish the short walk back to my house!I have been blessed with my father's genetics...everyone in his extended family was tall and fairly slim-built...so I don't know how weight affects or if it affects the level of pain. I have begun gaining weight as my ability to maintain my level of activity has decreased! I am about 20-30 pounds over, but I sympatize with anyone who has had that battle! I can't diet for love or money! It's a "catch-22" situation; the more I hurt the less I do and the less I do, the more I hurt!I would love to hear from anyone who had Dr. LaGrone as their doctor. I was going to use someone in Houston, but backed out. I just never felt the degree of confidence in him that I needed.JanellPS Hi to Debra!...I'm still here!> > > > > >> > > > > >> > > > > > I'm new to the group and taken the suggestion to read through older> > > > > > posts before posting. I did find many inspiring and informative, and> > > > > > it's very reassuring to know that I'm not alone in this pain. > > > However,> > > > > > I do have a few questions on topics that have been touched on, but I> > > > > > haven't seen specific answers to.> > > > > >> > > > > > Has anyone had surgery for endometriosis and has that helped > > > with lower> > > > > > back pain? Has breast reduction surgery made a big difference in the> > > > > > pain and does that help long term? Also will surgeons operate on> > > > > > someone significantly overweight (230 pounds) and will losing weight> > > > > > alone alleviate the pain?> > > > > >> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13, > > > when my> > > > > > doctor said I was growing "too tall" and it wasn't helping > > > anymore, that> > > > > > my curves (upper and lower) were getting significantly worse. > > > I'm not> > > > > > sure of exact numbers but I believe it was over 80 degrees. At > > > age 14 I> > > > > > had a spinal fusion done at the University Hospital in Madison, > > > WI by> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I> > > > > > believe he went on to practice at Children's Hospital in > > > Philadelphia.> > > > > > I believe I was also one of the first in the country to have two> > > > > > harrington rods in my fusion.> > > > > >> > > > > > I remember at my last post op doctor visit being told to avoid horse> > > > > > back riding, skiing, and that I wouldn't need to come back > > > unless I had> > > > > > children or a serious car accident. Since neither happened (I was> > > > > > pregnant twice but had two early miscarraiges) I never went back > > > except> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my> > > > > > fusion looked fine.> > > > > >> > > > > > I realise I have been very lucky, I've had a few bouts with pain > > > (mainly> > > > > > from lifting heavy objects) through the years, that would get better> > > > > > with rest. I thought of my scoliosis as a childhood problem that had> > > > > > been fixed. Until about two years ago, when I started getting severe> > > > > > lower back pain constantly. Also I've had pain in my leg, > > > weakness, and> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder. > > > I have> > > > > > occasional numbness in my fingers and toes, that my neurologist > > > thought> > > > > > may be neuropathy, but tests ruled that out. I have tightness > > > and pain> > > > > > in middle of my back, and neck. I've seen a chiropractor and > > > physical> > > > > > therapist, but these various pains aren't getting better.> > > > > >> > > > > > I was shocked to read about flatback and realise all of this may be> > > > > > related to my harrington rods! Does anyone know any doctors > > > anywhere in> > > > > > the state of Wisconsin that I could start with? Do I need to > > > return to> > > > > > the University Hospital where I had my original spinal fusion?> > > > > >> > > > > > I really appreciate everyone's help and support. Thank you.> > > > > >> > > > >> > > > >> > > >> > >> > > > > Kathy,> > > > Were you here in Houston?> > > > Debra> >>

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Guest guest

Hi Noreen...

The doctors at UCSF are routinely doing scoliosis surgeries on 70 and 80 year

olds, with great results.

Regards,

> > > > > > > >

> > > > > > > >

> > > > > > > > I'm new to the group and taken the suggestion to read through

older

> > > > > > > > posts before posting. I did find many inspiring and informative,

and

> > > > > > > > it's very reassuring to know that I'm not alone in this pain.

> > > > > However,

> > > > > > > > I do have a few questions on topics that have been touched on,

but I

> > > > > > > > haven't seen specific answers to.

> > > > > > > >

> > > > > > > > Has anyone had surgery for endometriosis and has that helped

> > > > > with lower

> > > > > > > > back pain? Has breast reduction surgery made a big difference in

the

> > > > > > > > pain and does that help long term? Also will surgeons operate on

> > > > > > > > someone significantly overweight (230 pounds) and will losing

weight

> > > > > > > > alone alleviate the pain?

> > > > > > > >

> > > > > > > > This is my story. I wore a milwaukee brace from age 9 until 13,

> > > > > when my

> > > > > > > > doctor said I was growing " too tall " and it wasn't helping

> > > > > anymore, that

> > > > > > > > my curves (upper and lower) were getting significantly worse.

> > > > > I'm not

> > > > > > > > sure of exact numbers but I believe it was over 80 degrees. At

> > > > > age 14 I

> > > > > > > > had a spinal fusion done at the University Hospital in Madison,

> > > > > WI by

> > > > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a

surgeon? I

> > > > > > > > believe he went on to practice at Children's Hospital in

> > > > > Philadelphia.

> > > > > > > > I believe I was also one of the first in the country to have two

> > > > > > > > harrington rods in my fusion.

> > > > > > > >

> > > > > > > > I remember at my last post op doctor visit being told to avoid

horse

> > > > > > > > back riding, skiing, and that I wouldn't need to come back

> > > > > unless I had

> > > > > > > > children or a serious car accident. Since neither happened (I

was

> > > > > > > > pregnant twice but had two early miscarraiges) I never went back

> > > > > except

> > > > > > > > in 2003 when I had a TIA (small stroke). At that time they said

my

> > > > > > > > fusion looked fine.

> > > > > > > >

> > > > > > > > I realise I have been very lucky, I've had a few bouts with pain

> > > > > (mainly

> > > > > > > > from lifting heavy objects) through the years, that would get

better

> > > > > > > > with rest. I thought of my scoliosis as a childhood problem that

had

> > > > > > > > been fixed. Until about two years ago, when I started getting

severe

> > > > > > > > lower back pain constantly. Also I've had pain in my leg,

> > > > > weakness, and

> > > > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder.

> > > > > I have

> > > > > > > > occasional numbness in my fingers and toes, that my neurologist

> > > > > thought

> > > > > > > > may be neuropathy, but tests ruled that out. I have tightness

> > > > > and pain

> > > > > > > > in middle of my back, and neck. I've seen a chiropractor and

> > > > > physical

> > > > > > > > therapist, but these various pains aren't getting better.

> > > > > > > >

> > > > > > > > I was shocked to read about flatback and realise all of this may

be

> > > > > > > > related to my harrington rods! Does anyone know any doctors

> > > > > anywhere in

> > > > > > > > the state of Wisconsin that I could start with? Do I need to

> > > > > return to

> > > > > > > > the University Hospital where I had my original spinal fusion?

> > > > > > > >

> > > > > > > > I really appreciate everyone's help and support. Thank you.

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > Kathy,

> > > >

> > > > Were you here in Houston?

> > > >

> > > > Debra

> > > >

> > >

> >

>

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From: " Kirkaldie" <.Kirkaldie@...>Sent: Monday, March 15, 2010 10:42 AM Subject: Re: [ ] Re: A few questions

Alvera,

I'd like to caution you and others about putting phone #'s on postings that go to the group. You have to remember that this is a public forum, people do have to join, but that doesn't mean that they share our malady, and may be here to glean info, besides about scoliosis. I'd err on the side of caution, keep private info private, and if you'd like to exchange numbers, do it through private e-mails. To our knowledge we haven't had any problems with this, but given the world such as it is, I'd play it safe.

Colorado Springs

re: [ ] Re: A few questions

Hi JanellMy name is Alvera White....live in Guymon OK. Presently in Houston for a week...What brings me here is a daughter in Sugar Land and appointments with MD cancer center. Meet with my oncologist tomorrow. Nearly 5 years ago cancer was discovered in both breast. I'm on a 5yr adjuvant treatment. Have been seeing Dr. LaGrone for several years....and will see him on 24th of this month. Starting to do some ground work for a surgery in the fall. He does not prefer to do anywork until I have cancer medicaton out of my system...Presently I'm icing my neck and back. Terrific pain. Have darvacet...but shy away from as much drug as I can. I'm starting to meet some very nice, sweet, honest ladies that have the same problem we fight.Wish I could meet you. According to your surgery description It sound the very same for me..although I don't know if he mentioned the cage. I only have one rod and it has done it's job very well. Been in for 24 years. I have been active and still mow and take on whatever challenge I can. In fact I am pleased to say my daughters tell me I can work circles around them.Here is my cell number if you would like to call me. I'm single...and have the time.281-684-8448.May God Bless you and I feel like you have one of the top doctors....there are several as you go further north and east....but for mid-west he is a God-send.Sincerely,Alvera White

Hi,Kathy.I had surgery in Houston with Dr. Harrington as my doctor in June 1963. I had curvatures of 60* and 56*: had 1 long rod and 2 shorter rods and a bunch of hooks (11 I think)from T5 through L4.I will be having flatback revision surgery with Dr. LaGrone in Amarillo June 7. He will remove all the hardware, repair pseudarthroses (long rod broke at T11), osteotomies, extend fusion to the sacrum with re-instrumentation of spine using segmental implants, plus remove 2 disks and put in "cages"....? I'm still learning about that part.At 63, I can't say I'm looking forward to this, but if it helps me and lasts as long as the FIRST surgery....well, I'll be happy. I had 2 children (labor for 3 hours for 1st; 30 min. for 2nd), built rooms, fireplaces, gardened and, in general, have had a very active life. The last 2 or 3 years have seen some major changes. Lower back and left hip & leg burning, stinging, numbness and has become progressively worse. I retired last June from teaching(in part because I couldn't stand more than a few minutes without burning). I am no doctor, but I've never had problems with endometriosis and the burning in my lower back has made me sit down in the middle of my yard rather than finish the short walk back to my house!I have been blessed with my father's genetics...everyone in his extended family was tall and fairly slim-built...so I don't know how weight affects or if it affects the level of pain. I have begun gaining weight as my ability to maintain my level of activity has decreased! I am about 20-30 pounds over, but I sympatize with anyone who has had that battle! I can't diet for love or money! It's a "catch-22" situation; the more I hurt the less I do and the less I do, the more I hurt!I would love to hear from anyone who had Dr. LaGrone as their doctor. I was going to use someone in Houston, but backed out. I just never felt the degree of confidence in him that I needed.JanellPS Hi to Debra!...I'm still here!> > > > > >> > > > > >> > > > > > I'm new to the group and taken the suggestion to read through older> > > > > > posts before posting. I did find many inspiring and informative, and> > > > > > it's very reassuring to know that I'm not alone in this pain. > > > However,> > > > > > I do have a few questions on topics that have been touched on, but I> > > > > > haven't seen specific answers to.> > > > > >> > > > > > Has anyone had surgery for endometriosis and has that helped > > > with lower> > > > > > back pain? Has breast reduction surgery made a big difference in the> > > > > > pain and does that help long term? Also will surgeons operate on> > > > > > someone significantly overweight (230 pounds) and will losing weight> > > > > > alone alleviate the pain?> > > > > >> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13, > > > when my> > > > > > doctor said I was growing "too tall" and it wasn't helping > > > anymore, that> > > > > > my curves (upper and lower) were getting significantly worse. > > > I'm not> > > > > > sure of exact numbers but I believe it was over 80 degrees. At > > > age 14 I> > > > > > had a spinal fusion done at the University Hospital in Madison, > > > WI by> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I> > > > > > believe he went on to practice at Children's Hospital in > > > Philadelphia.> > > > > > I believe I was also one of the first in the country to have two> > > > > > harrington rods in my fusion.> > > > > >> > > > > > I remember at my last post op doctor visit being told to avoid horse> > > > > > back riding, skiing, and that I wouldn't need to come back > > > unless I had> > > > > > children or a serious car accident. Since neither happened (I was> > > > > > pregnant twice but had two early miscarraiges) I never went back > > > except> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my> > > > > > fusion looked fine.> > > > > >> > > > > > I realise I have been very lucky, I've had a few bouts with pain > > > (mainly> > > > > > from lifting heavy objects) through the years, that would get better> > > > > > with rest. I thought of my scoliosis as a childhood problem that had> > > > > > been fixed. Until about two years ago, when I started getting severe> > > > > > lower back pain constantly. Also I've had pain in my leg, > > > weakness, and> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder. > > > I have> > > > > > occasional numbness in my fingers and toes, that my neurologist > > > thought> > > > > > may be neuropathy, but tests ruled that out. I have tightness > > > and pain> > > > > > in middle of my back, and neck. I've seen a chiropractor and > > > physical> > > > > > therapist, but these various pains aren't getting better.> > > > > >> > > > > > I was shocked to read about flatback and realise all of this may be> > > > > > related to my harrington rods! Does anyone know any doctors > > > anywhere in> > > > > > the state of Wisconsin that I could start with? Do I need to > > > return to> > > > > > the University Hospital where I had my original spinal fusion?> > > > > >> > > > > > I really appreciate everyone's help and support. Thank you.> > > > > >> > > > >> > > > >> > > >> > >> > > > > Kathy,> > > > Were you here in Houston?> > > > Debra> >>

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Guest guest

Thanks......I thought I was probably throwing my number out into space...Will need to sit down and study how this is all done properly....As a result of posting openly...I have had an opportunity to meet 3 ladies on this medical trip since I left March 5th....I do need to be more cautious and not reveal so much personal information. If you will bear with me...I will figure this outsincerely,Alvera White

From: " Kirkaldie" <.Kirkaldie@...>Sent: Monday, March 15, 2010 10:42 AM Subject: Re: [ ] Re: A few questions

Alvera,

I'd like to caution you and others about putting phone #'s on postings that go to the group. You have to remember that this is a public forum, people do have to join, but that doesn't mean that they share our malady, and may be here to glean info, besides about scoliosis. I'd err on the side of caution, keep private info private, and if you'd like to exchange numbers, do it through private e-mails. To our knowledge we haven't had any problems with this, but given the world such as it is, I'd play it safe.

Colorado Springs

re: [ ] Re: A few questions

Hi JanellMy name is Alvera White....live in Guymon OK. Presently in Houston for a week...What brings me here is a daughter in Sugar Land and appointments with MD cancer center. Meet with my oncologist tomorrow. Nearly 5 years ago cancer was discovered in both breast. I'm on a 5yr adjuvant treatment. Have been seeing Dr. LaGrone for several years....and will see him on 24th of this month. Starting to do some ground work for a surgery in the fall. He does not prefer to do anywork until I have cancer medicaton out of my system...Presently I'm icing my neck and back. Terrific pain. Have darvacet...but shy away from as much drug as I can. I'm starting to meet some very nice, sweet, honest ladies that have the same problem we fight.Wish I could meet you. According to your surgery description It sound the very same for me..although I don't know if he mentioned the cage. I only have one rod and it has done it's job very well. Been in for 24 years. I have been active and still mow and take on whatever challenge I can. In fact I am pleased to say my daughters tell me I can work circles around them.Here is my cell number if you would like to call me. I'm single...and have the time.281-684-8448.May God Bless you and I feel like you have one of the top doctors....there are several as you go further north and east....but for mid-west he is a God-send.Sincerely,Alvera White

Hi,Kathy.I had surgery in Houston with Dr. Harrington as my doctor in June 1963. I had curvatures of 60* and 56*: had 1 long rod and 2 shorter rods and a bunch of hooks (11 I think)from T5 through L4.I will be having flatback revision surgery with Dr. LaGrone in Amarillo June 7. He will remove all the hardware, repair pseudarthroses (long rod broke at T11), osteotomies, extend fusion to the sacrum with re-instrumentation of spine using segmental implants, plus remove 2 disks and put in "cages"....? I'm still learning about that part.At 63, I can't say I'm looking forward to this, but if it helps me and lasts as long as the FIRST surgery....well, I'll be happy. I had 2 children (labor for 3 hours for 1st; 30 min. for 2nd), built rooms, fireplaces, gardened and, in general, have had a very active life. The last 2 or 3 years have seen some major changes. Lower back and left hip & leg burning, stinging, numbness and has become progressively worse. I retired last June from teaching(in part because I couldn't stand more than a few minutes without burning). I am no doctor, but I've never had problems with endometriosis and the burning in my lower back has made me sit down in the middle of my yard rather than finish the short walk back to my house!I have been blessed with my father's genetics...everyone in his extended family was tall and fairly slim-built...so I don't know how weight affects or if it affects the level of pain. I have begun gaining weight as my ability to maintain my level of activity has decreased! I am about 20-30 pounds over, but I sympatize with anyone who has had that battle! I can't diet for love or money! It's a "catch-22" situation; the more I hurt the less I do and the less I do, the more I hurt!I would love to hear from anyone who had Dr. LaGrone as their doctor. I was going to use someone in Houston, but backed out. I just never felt the degree of confidence in him that I needed.JanellPS Hi to Debra!...I'm still here!> > > > > >> > > > > >> > > > > > I'm new to the group and taken the suggestion to read through older> > > > > > posts before posting. I did find many inspiring and informative, and> > > > > > it's very reassuring to know that I'm not alone in this pain. > > > However,> > > > > > I do have a few questions on topics that have been touched on, but I> > > > > > haven't seen specific answers to.> > > > > >> > > > > > Has anyone had surgery for endometriosis and has that helped > > > with lower> > > > > > back pain? Has breast reduction surgery made a big difference in the> > > > > > pain and does that help long term? Also will surgeons operate on> > > > > > someone significantly overweight (230 pounds) and will losing weight> > > > > > alone alleviate the pain?> > > > > >> > > > > > This is my story. I wore a milwaukee brace from age 9 until 13, > > > when my> > > > > > doctor said I was growing "too tall" and it wasn't helping > > > anymore, that> > > > > > my curves (upper and lower) were getting significantly worse. > > > I'm not> > > > > > sure of exact numbers but I believe it was over 80 degrees. At > > > age 14 I> > > > > > had a spinal fusion done at the University Hospital in Madison, > > > WI by> > > > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I> > > > > > believe he went on to practice at Children's Hospital in > > > Philadelphia.> > > > > > I believe I was also one of the first in the country to have two> > > > > > harrington rods in my fusion.> > > > > >> > > > > > I remember at my last post op doctor visit being told to avoid horse> > > > > > back riding, skiing, and that I wouldn't need to come back > > > unless I had> > > > > > children or a serious car accident. Since neither happened (I was> > > > > > pregnant twice but had two early miscarraiges) I never went back > > > except> > > > > > in 2003 when I had a TIA (small stroke). At that time they said my> > > > > > fusion looked fine.> > > > > >> > > > > > I realise I have been very lucky, I've had a few bouts with pain > > > (mainly> > > > > > from lifting heavy objects) through the years, that would get better> > > > > > with rest. I thought of my scoliosis as a childhood problem that had> > > > > > been fixed. Until about two years ago, when I started getting severe> > > > > > lower back pain constantly. Also I've had pain in my leg, > > > weakness, and> > > > > > sciatic nerve, that I attributed to my stroke, but now I wonder. > > > I have> > > > > > occasional numbness in my fingers and toes, that my neurologist > > > thought> > > > > > may be neuropathy, but tests ruled that out. I have tightness > > > and pain> > > > > > in middle of my back, and neck. I've seen a chiropractor and > > > physical> > > > > > therapist, but these various pains aren't getting better.> > > > > >> > > > > > I was shocked to read about flatback and realise all of this may be> > > > > > related to my harrington rods! Does anyone know any doctors > > > anywhere in> > > > > > the state of Wisconsin that I could start with? Do I need to > > > return to> > > > > > the University Hospital where I had my original spinal fusion?> > > > > >> > > > > > I really appreciate everyone's help and support. Thank you.> > > > > >> > > > >> > > > >> > > >> > >> > > > > Kathy,> > > > Were you here in Houston?> > > > Debra> >>

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  • 2 weeks later...
Guest guest

Hi ,

Thank you so much for the information! I really appreciate it. I'm sorry that I

didn't respond earlier. I actually just returned from a week vacation in

Orlando, where my inlaws have a timeshare. I kind of put all of my concerns

about my back on the back burner until I got back. I'm trying to enjoy doing

as much as I can until (if) my back gets worse.

Anyway, I am currently on my state's high risk insurance plan, so I need to do

research to see if they will cover me seeing a doctor from out of state. I also

want to contact UW-Madison to see what kinds of x-rays they took since I'm not

sure if I need to have more done. Then hopefully I'll be able to get in to see

Dr. Koski. He sure sounds like a great doctor, I'm glad you found someone so

helpful.

It's interesting that you were born in Appleton! I guess it really is a small

world after all. (No I didn't go to Disney but it seemed appropriate!)

The information about Syndrome/APS was interesting. That was a good

suggestion to make,as I do have a lot of the symptoms. I'm not sure if I ever

have been tested specifically for it, but I did have a wide variety of blood

tests both before and after my miscarraiges.

I know they said I don't have Lupus. I did look at the treatment for APS, and I

already take a low dose aspirin every day. I have since 2003. After my first

miscarraige I was put on Lovenox shots, which is similar to Heparin, (which was

also mentioned) while I was pregnant. Unfortunately my second pregnancy was an

ectopic pregnancy, which I don't think anything will help with. My doctor has

recommended that I use the shots before I get pregnant, while trying, in the

future. However they are very expensive, about $900 a month, and insurance

won't cover it until you're pregnant. It's always something!

Anyway, thanks again for the suggestions. Take care,

Noreen

> > > >

> > > >

> > > > I'm new to the group and taken the suggestion to read through older

> > > > posts before posting. I did find many inspiring and informative, and

> > > > it's very reassuring to know that I'm not alone in this pain. However,

> > > > I do have a few questions on topics that have been touched on, but I

> > > > haven't seen specific answers to.

> > > >

> > > > Has anyone had surgery for endometriosis and has that helped with lower

> > > > back pain? Has breast reduction surgery made a big difference in the

> > > > pain and does that help long term? Also will surgeons operate on

> > > > someone significantly overweight (230 pounds) and will losing weight

> > > > alone alleviate the pain?

> > > >

> > > > This is my story. I wore a milwaukee brace from age 9 until 13, when my

> > > > doctor said I was growing " too tall " and it wasn't helping anymore, that

> > > > my curves (upper and lower) were getting significantly worse. I'm not

> > > > sure of exact numbers but I believe it was over 80 degrees. At age 14 I

> > > > had a spinal fusion done at the University Hospital in Madison, WI by

> > > > Dr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? I

> > > > believe he went on to practice at Children's Hospital in Philadelphia.

> > > > I believe I was also one of the first in the country to have two

> > > > harrington rods in my fusion.

> > > >

> > > > I remember at my last post op doctor visit being told to avoid horse

> > > > back riding, skiing, and that I wouldn't need to come back unless I had

> > > > children or a serious car accident. Since neither happened (I was

> > > > pregnant twice but had two early miscarraiges) I never went back except

> > > > in 2003 when I had a TIA (small stroke). At that time they said my

> > > > fusion looked fine.

> > > >

> > > > I realise I have been very lucky, I've had a few bouts with pain (mainly

> > > > from lifting heavy objects) through the years, that would get better

> > > > with rest. I thought of my scoliosis as a childhood problem that had

> > > > been fixed. Until about two years ago, when I started getting severe

> > > > lower back pain constantly. Also I've had pain in my leg, weakness, and

> > > > sciatic nerve, that I attributed to my stroke, but now I wonder. I have

> > > > occasional numbness in my fingers and toes, that my neurologist thought

> > > > may be neuropathy, but tests ruled that out. I have tightness and pain

> > > > in middle of my back, and neck. I've seen a chiropractor and physical

> > > > therapist, but these various pains aren't getting better.

> > > >

> > > > I was shocked to read about flatback and realise all of this may be

> > > > related to my harrington rods! Does anyone know any doctors anywhere in

> > > > the state of Wisconsin that I could start with? Do I need to return to

> > > > the University Hospital where I had my original spinal fusion?

> > > >

> > > > I really appreciate everyone's help and support. Thank you.

> > > >

> > >

> >

>

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  • 7 months later...

There are are many children on ldn.especially autists and

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