Hello

[Guest guest]

Let's not make the mistake of confusing the arrest of scoliotic

progrssion with the use of a particular type of distraction

instrumentation, now outdated and known to be dangerous and for, many

of us, seriously deforming.

I had twenty good years from my own fusion for scoliosis at age 13

(complete with eighteen months of body casts). No doubt I owe much to

the surgical skill and expertise of the docs who fused me without

hardware so that my spine could withstand the external correction

afforded by various plaster casts. And no doubt the surgeon who

extended my fusion when I was 37, this time applying distraction

forces via a modified Harrington rod, likewise meant well. At this

point it is difficult to sort out any theoretical good effects of

that second surgery from the massive and profound damage wreaked on

my body by the now-anachronistic (though relatively inexpensive and

easy-to-use) form of instrumentation which was the best anyone had

for some forty years.

It is one thing to assert that you had a fine and compassionate

doctor who did the best he could for your scoliosis. It is quite

another to insist that the seriously deficient instrumentation

available to that doctor at that time in history was somehow integral

to the success of the surgery.

I will rejoice when scoliosis can be treated even without today's

nonsegmental state-of-the-art hardware, pediatric thoracoscopic

spinal fusion, artificial disk technologies, etc. I will be thrilled

when we can prevent scoliosis and make all future treatment of

scoliosis unnecessary.I am relieved that initial surgery is already

so much easier for kids with scoliosis than it was for us.

But seriously, folks, this is not the place to be praising and

blessing the Harrington rod. The Harrington rod has been a debacle --

a disaster of proportions we have not even fully been able to assess

or quantify as yet, as the numbers of the " walking wounded " continue

to swell visibly.

I'll bet there are people still living today who once suffered from,

say, clinical depression with hallucinations, and who managed to put

their lives back together after a sojourn in a 1940's or 1950's

institution. Does this mean we should praise whatever treatment

preceded their last remission, whether insulin shock or prefrontal

lobotomy?

> Debbie,

> How fortunate you were to have had such a marvelous and inovative

surgeon!!

> The surgeon who did my Harrington rod in 1970, Dr. Evarts

at the

> Cleveland Clinic Foundation Hospital had done some of his H-rod

training under

> Dr. Harrinton...sure helps to know that the surgeon operating on

you was

> trained by the best in the business!! I know as sure as I know my

teenaged son

> will play loud music when he gets home from work tonight, that were

it not for

> men like Dr. Harrington, Dr. Evarts and the many Orthopedic

surgeons from

> the " good old days " , I would not be a Mom to that " boy who likes

loud music "

> today!! When I see people my age and older who did not have access

to the same

> medical/surgical care I did, bent over and in wheelchairs I can't

help but

> think, " There but for the grace of God... "

>

> All the best,

> Beth

[Guest guest]

" Rasche "

>>>>>>> " But seriously, folks, this is not the place to be praising and

blessing the Harrington rod. The Harrington rod has been a debacle --

a disaster of proportions we have not even fully been able to assess

or quantify as yet, as the numbers of the " walking wounded " continue

to swell visibly "

AMEN to that .

from one of the walking wounded...........Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Thanks, Carol.

I know it is very hard to come to grips with the reality of all this. I " have

been there " --

and actually still " am there " in some respects. (Revision surgery was my

salvation, but not a cure-all.)

No one wants to think that a well-meaning surgeon could have performed anything

but a benign procedure, even by accident or oversight -- let alone caused

further damage and complex deformity. Unfortunately it seems necessary to come

to grips with this hard fact at some point, to mourn as necessary, and then to

figure out how to pick up some of the pieces of one's life. I'll let you know

when I have accomplished all this!

Re: Re: Hello

" Rasche "

>>>>>>> " But seriously, folks, this is not the place to be praising and

blessing the Harrington rod. The Harrington rod has been a debacle --

a disaster of proportions we have not even fully been able to assess

or quantify as yet, as the numbers of the " walking wounded " continue

to swell visibly "

AMEN to that .

from one of the walking wounded...........Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

See the attached file for details.

[Guest guest]

Makes perfect sense, ! Welcome to the group, but I'm sorry that

you are having problems. Ask away if you have any questions, and

we'll be happy to share our info. We're all in this together.....

loriann

1977 Spinal fusion for scoliosis S Curve (T5 - sacrum with two

Harrington Rods)

Flatback syndrome

Congenital Hip Dysplasia - bilateral

Right Total Hip Replacement May 2003

Flatback revision surgery is in my future

Syringomyelia (2mm syrinx from T3 to at least T7)

[Guest guest]

Hello I am Syril IvlerRubin CLL/SLL wait and watch 2 1/2 years I will be

registered for Dr Coutrie presentation via telephone May 13 let me hear from you

Syrilscargo@...

[Guest guest]

I hadn't heard about the discussion but Dr Coutre was my Dr for the clinical

trail and he literally saved my life. If you can get in on the discussion.

He's the best of the best.

Sue Bunte

Bonnie Goodhart <goody.dogs@...> wrote:

Haven't gotten any posts for over a week. Hope everyone is ok. Is

anyone else participating in the telephone discussion entitled

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

featuring Coutie, MD. on Thursday, May 13 at 7-8 EST.?

Just wondering if there would be any others joining in so we can

discuss it together. Hope to hear from you all real soon.

Bonnie

[Guest guest]

Hi Bonnie - I also am a little frustrated - have asked many times for

participation, folks just seem to be interested in someone posting something

wise and

reading it - I agree, this should be a discussion group - Every time I do

think of something, I do post it - But the site is intended to be a sharing

platform for all who have something of general interest to say about CLL - we

had a

couple of good discussion, on sinuses, on re-treatment - But I don't want to

be the only source of info, I have my own opinions, sure, but I don't want to

get into the role that is in, where she effectively becomes a teacher -

I would have hoped people would be more participatory -

[Guest guest]

Bonnie - also, have not heard about this particular discussion or listening -

can you give us details?

[Guest guest]

and whoever else might be interested – Below is my registration

confirmation for the talk I had mentioned. A telephone number is given

at the bottom of the page if you would like to try and register. I have

no idea if registration is still open or not but I would assume it

probably is as it’s a telephone seminar. You wouldn’t get the meeting

materials on time, but it is still worth sending for them.

Please let me know if anyone else does register. At this time it seems

there are only two of us. I think this should be extremely informative.

I’m sorry I didn’t mention it earlier. Well, better late then never.

Hope we call all share our feelings about the program.

P.S. – ---- your insight and knowledge are a real blessing to all

of us. Please never hesitate to share. Your sharing is God’s gift to

us through you. You could actually call it your calling – at least in

my mind.

Bonnie

RE:

Registration Confirmation ­- Living with Chronic Lymphocytic Leukemia-

New Treatment Strategies

Thursday, May 13, 2004 - 7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/4:00-5:00 PM Pacific Time)

Dear Participant,

RE:

Registration Confirmation ­- Living with Chronic Lymphocytic Leukemia-

New Treatment Strategies

Thursday, May 13, 2004 - 7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/4:00-5:00 PM Pacific Time)

Dear Participant,

On behalf of The Leukemia & Lymphoma Society, thank you

for registering for Living with Chronic Lymphocytic

Leukemia- New Treatment Strategies. The featured

speaker for this program will be Coutré,

MD, Assistant Professor of Medicine, Division of

Hematology at Stanford University School of Medicine

in Stanford, California. We are happy that you will

join us for this informative session, which is being

supported through an unrestricted educational grant

from Berlex Laboratories, Inc. The program agenda can be found below.

The following are some important details regarding this program:

TO JOIN THE FREE TELEPHONE EDUCATION PROGRAM

1. Please dial in to participate: (800) 862-9098 (Toll-free)

2. It is recommended that you dial in 15-20 minutes prior to the

scheduled start time.

**Please do not dial this phone number more than one hour prior to the

call**

3. Upon connection, when prompted, please use CLL as your

conference name/ID.

The operator will then ask for information including

your name, location, and the number of participants

on your telephone line.

MEETING MATERIALS

If you registered after May 7th, your materials may arrive

after the program. To request other Chronic Lymphocytic

Leukemia related materials, please fill out and return

the enclosed Request for Materials Order Form.

The requested materials will then be forwarded to

the address you provided.

CONTINUING EDUCATION INFORMATION FOR NURSES

Approval for nurses has been obtained by The Leukemia &

Lymphoma Society's National Office under provider

number CEP 5832 to award 1.0 continuing education

contact hour through the California Board of Registered Nurses.

In order to receive credit for this event, you will

need to complete the Continuing Education for Registered

Nurses Form enclosed in the meeting materials you

will receive in the mail. Please send the completed

form to The Leukemia & Lymphoma Society at the

address located on the bottom of the form.

For additional information on this program or other

programs and services offered by The Leukemia &

Lymphoma Society, please call the Society's Information

Resource Center (IRC) toll-free at (800) 955-4572.

A certified professional will be available to answer

any questions you may have.

We look forward to an exciting and educational program!

Sincerely yours,

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

_____

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Thursday, May 13, 2004

7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/ 4:00-5:00 PM Pacific Time)

AGENDA

7:00 PM

Introduction

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

7:05 PM

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Coutré, MD

Assistant Professor of Medicine in the Division of Hematology

Stanford University School of Medicine in Stanford, California

7:35 PM

Question and Answer Session

Moderated by: Hildy Dillon, MPH

7:55 PM

Closing Remarks

Hildy Dillon, MPH

8:00 PM

Adjournment

On behalf of The Leukemia & Lymphoma Society, thank you

for registering for Living with Chronic Lymphocytic

Leukemia- New Treatment Strategies. The featured

speaker for this program will be Coutré,

MD, Assistant Professor of Medicine, Division of

Hematology at Stanford University School of Medicine

in Stanford, California. We are happy that you will

join us for this informative session, which is being

supported through an unrestricted educational grant

from Berlex Laboratories, Inc. The program agenda can be found below.

The following are some important details regarding this program:

TO JOIN THE FREE TELEPHONE EDUCATION PROGRAM

1. Please dial in to participate: (800) 862-9098 (Toll-free)

2. It is recommended that you dial in 15-20 minutes prior to the

scheduled start time.

**Please do not dial this phone number more than one hour prior to the

call**

3. Upon connection, when prompted, please use CLL as your

conference name/ID.

The operator will then ask for information including

your name, location, and the number of participants

on your telephone line.

MEETING MATERIALS

If you registered after May 7th, your materials may arrive

after the program. To request other Chronic Lymphocytic

Leukemia related materials, please fill out and return

the enclosed Request for Materials Order Form.

The requested materials will then be forwarded to

the address you provided.

CONTINUING EDUCATION INFORMATION FOR NURSES

Approval for nurses has been obtained by The Leukemia &

Lymphoma Society's National Office under provider

number CEP 5832 to award 1.0 continuing education

contact hour through the California Board of Registered Nurses.

In order to receive credit for this event, you will

need to complete the Continuing Education for Registered

Nurses Form enclosed in the meeting materials you

will receive in the mail. Please send the completed

form to The Leukemia & Lymphoma Society at the

address located on the bottom of the form.

For additional information on this program or other

programs and services offered by The Leukemia &

Lymphoma Society, please call the Society's Information

Resource Center (IRC) toll-free at (800) 955-4572.

A certified professional will be available to answer

any questions you may have.

We look forward to an exciting and educational program!

Sincerely yours,

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

_____

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Thursday, May 13, 2004

7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/ 4:00-5:00 PM Pacific Time)

AGENDA

7:00 PM

Introduction

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

7:05 PM

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Coutré, MD

Assistant Professor of Medicine in the Division of Hematology

Stanford University School of Medicine in Stanford, California

7:35 PM

Question and Answer Session

Moderated by: Hildy Dillon, MPH

7:55 PM

Closing Remarks

Hildy Dillon, MPH

8:00 PM

Adjournment

Re: Hello

Bonnie - also, have not heard about this particular discussion or

listening -

can you give us details?

_____

[Guest guest]

I'm just one of Dr Coutre's many success stories. I can't participate in this

particular discussion because I have to work. Thats right folks, I'm back to

work at an 8 to 5 job. I was supposed to be dead 4 years ago. Not only am I

still vertical but I have my life back thanks to Dr Coutre. If you don't sign

up and listen to what he has to say you ar doing yourself an injustice.

Education is your best ammunition.

Sue Bunte

BonnieGoodhart <goody.dogs@...> wrote:

and whoever else might be interested – Below is my registration

confirmation for the talk I had mentioned. A telephone number is given

at the bottom of the page if you would like to try and register. I have

no idea if registration is still open or not but I would assume it

probably is as it’s a telephone seminar. You wouldn’t get the meeting

materials on time, but it is still worth sending for them.

Please let me know if anyone else does register. At this time it seems

there are only two of us. I think this should be extremely informative.

I’m sorry I didn’t mention it earlier. Well, better late then never.

Hope we call all share our feelings about the program.

P.S. – ---- your insight and knowledge are a real blessing to all

of us. Please never hesitate to share. Your sharing is God’s gift to

us through you. You could actually call it your calling – at least in

my mind.

Bonnie

RE:

Registration Confirmation & shy;- Living with Chronic Lymphocytic Leukemia-

New Treatment Strategies

Thursday, May 13, 2004 - 7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/4:00-5:00 PM Pacific Time)

Dear Participant,

RE:

Registration Confirmation & shy;- Living with Chronic Lymphocytic Leukemia-

New Treatment Strategies

Thursday, May 13, 2004 - 7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/4:00-5:00 PM Pacific Time)

Dear Participant,

On behalf of The Leukemia & Lymphoma Society, thank you

for registering for Living with Chronic Lymphocytic

Leukemia- New Treatment Strategies. The featured

speaker for this program will be Coutré,

MD, Assistant Professor of Medicine, Division of

Hematology at Stanford University School of Medicine

in Stanford, California. We are happy that you will

join us for this informative session, which is being

supported through an unrestricted educational grant

from Berlex Laboratories, Inc. The program agenda can be found below.

The following are some important details regarding this program:

TO JOIN THE FREE TELEPHONE EDUCATION PROGRAM

1. Please dial in to participate: (800) 862-9098 (Toll-free)

2. It is recommended that you dial in 15-20 minutes prior to the

scheduled start time.

**Please do not dial this phone number more than one hour prior to the

call**

3. Upon connection, when prompted, please use CLL as your

conference name/ID.

The operator will then ask for information including

your name, location, and the number of participants

on your telephone line.

MEETING MATERIALS

If you registered after May 7th, your materials may arrive

after the program. To request other Chronic Lymphocytic

Leukemia related materials, please fill out and return

the enclosed Request for Materials Order Form.

The requested materials will then be forwarded to

the address you provided.

CONTINUING EDUCATION INFORMATION FOR NURSES

Approval for nurses has been obtained by The Leukemia &

Lymphoma Society's National Office under provider

number CEP 5832 to award 1.0 continuing education

contact hour through the California Board of Registered Nurses.

In order to receive credit for this event, you will

need to complete the Continuing Education for Registered

Nurses Form enclosed in the meeting materials you

will receive in the mail. Please send the completed

form to The Leukemia & Lymphoma Society at the

address located on the bottom of the form.

For additional information on this program or other

programs and services offered by The Leukemia &

Lymphoma Society, please call the Society's Information

Resource Center (IRC) toll-free at (800) 955-4572.

A certified professional will be available to answer

any questions you may have.

We look forward to an exciting and educational program!

Sincerely yours,

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

_____

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Thursday, May 13, 2004

7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/ 4:00-5:00 PM Pacific Time)

AGENDA

7:00 PM

Introduction

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

7:05 PM

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Coutré, MD

Assistant Professor of Medicine in the Division of Hematology

Stanford University School of Medicine in Stanford, California

7:35 PM

Question and Answer Session

Moderated by: Hildy Dillon, MPH

7:55 PM

Closing Remarks

Hildy Dillon, MPH

8:00 PM

Adjournment

On behalf of The Leukemia & Lymphoma Society, thank you

for registering for Living with Chronic Lymphocytic

Leukemia- New Treatment Strategies. The featured

speaker for this program will be Coutré,

MD, Assistant Professor of Medicine, Division of

Hematology at Stanford University School of Medicine

in Stanford, California. We are happy that you will

join us for this informative session, which is being

supported through an unrestricted educational grant

from Berlex Laboratories, Inc. The program agenda can be found below.

The following are some important details regarding this program:

TO JOIN THE FREE TELEPHONE EDUCATION PROGRAM

1. Please dial in to participate: (800) 862-9098 (Toll-free)

2. It is recommended that you dial in 15-20 minutes prior to the

scheduled start time.

**Please do not dial this phone number more than one hour prior to the

call**

3. Upon connection, when prompted, please use CLL as your

conference name/ID.

The operator will then ask for information including

your name, location, and the number of participants

on your telephone line.

MEETING MATERIALS

If you registered after May 7th, your materials may arrive

after the program. To request other Chronic Lymphocytic

Leukemia related materials, please fill out and return

the enclosed Request for Materials Order Form.

The requested materials will then be forwarded to

the address you provided.

CONTINUING EDUCATION INFORMATION FOR NURSES

Approval for nurses has been obtained by The Leukemia &

Lymphoma Society's National Office under provider

number CEP 5832 to award 1.0 continuing education

contact hour through the California Board of Registered Nurses.

In order to receive credit for this event, you will

need to complete the Continuing Education for Registered

Nurses Form enclosed in the meeting materials you

will receive in the mail. Please send the completed

form to The Leukemia & Lymphoma Society at the

address located on the bottom of the form.

For additional information on this program or other

programs and services offered by The Leukemia &

Lymphoma Society, please call the Society's Information

Resource Center (IRC) toll-free at (800) 955-4572.

A certified professional will be available to answer

any questions you may have.

We look forward to an exciting and educational program!

Sincerely yours,

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

_____

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Thursday, May 13, 2004

7:00-8:00 PM Eastern Time

(6:00-7:00 PM Central Time/ 4:00-5:00 PM Pacific Time)

AGENDA

7:00 PM

Introduction

Hildy Dillon, MPH

Vice President, Patient Services, Disease Programs

The Leukemia & Lymphoma Society

7:05 PM

Living with Chronic Lymphocytic Leukemia- New Treatment Strategies

Coutré, MD

Assistant Professor of Medicine in the Division of Hematology

Stanford University School of Medicine in Stanford, California

7:35 PM

Question and Answer Session

Moderated by: Hildy Dillon, MPH

7:55 PM

Closing Remarks

Hildy Dillon, MPH

8:00 PM

Adjournment

Re: Hello

Bonnie - also, have not heard about this particular discussion or

listening -

can you give us details?

_____

[Guest guest]

Dear Elspeth,

Welcome! I read your message and our stories are quite simular. I had my

orginal surgery in 1973 at UCSF and started having troubles after the

birth of my first child in 1983. Many doctors later and no help, told that I

would never be pain free, I found my surgeon and my Flatback diagnosis. I

have had a series of revision surgeries and I'm doing great. I too have a

daughter who is twelve and has a " c " curve at seventeen degrees we are

watching. There is hope, and with the help of all the great people here, and

finding the right doc, we hope that your life can be less painful. Let me

know if I can help! Where are you located?

Denver

Hello

> Hello Fellow Flatbackers,

> I stumbled upon your group while doing research and I must say I was

> thrilled to know there are others out there who know what I'm going

> through.

>

> I had rod surgery at Wilford Hall USAF hospital in 1971. Things

> seemed fine, for the most part, until about a year after my daughter

> was born in 1985. The pain was horrible and I couldn't find a doctor

> who could tell me anything. Milograms and various scans and other

> voodoo were no help, so out of despair I made an appt with Dr. Irving

> in Houston. He told me my only two unfused vertebrae were simply

> worn out and there was nothing they could do about it. We talked

> about pain clinics and heavy medications, but with a baby I didn't

> want to do those things. I finally asked about a TENS unit and my

> local doctor reluctantly agreed to write a prescription for one.

> That thing was great and it really has bought me some time up to

> now. Lately it hasn't been doing such a great job. My hips hurt all

> the time, not to mention the neck pain.

>

> I had not heard the term " flatbacker " until about four years ago when

> we took my daughter to a pediatric scoliosis specialist (yes, it

> sucks that my only child also has scoliosis)at Children's Hosp in New

> Orleans. He took one look at me and asked what year I had surgery.

> I asked how he could tell and he said " flatbacker syndrome. "

>

> So, last night while unable to sleep because of my hip pain, I went

> online and typed in " harrington rod surgery " just to see what I

> got...and I got you.

>

> I'm looking forward to talking to people who know exactly how I feel!

>

> Thank you

> Elspeth

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

>

[Guest guest]

Hi there,

I have a question to anyone who can answer!! I received my spinal cord

stimulator on June 9th, 2004. It was working great in both legs. Now, I

can barely feel it in my left leg. I want to turn it up higher to get more

stimulation but it is at the absolute highest level. I have had the

medtronics rep reprogram it with his controller with NO luck. Has this

happened to anyone else? The rep said it should NEVER be this high on

anyone. My battery may last six months instead of years. I took an xray to

see if the lead has fallen off.....it does not look like it has. My doctor

is suppose to call me back and advise but comparing it to the old xray, it

looks the same. I am sooooooooo bummed as I was getting great relief. I

know the potential of these implants and I want the full effect. I have

some stimulation so I get some relief but of course we want it ALL!!

Thanks,

-- hello

Dear Stimulator friends,

Hi Sorry I haven't posted anything for a while my mom just had hip and

leg surgery. Her leg went short because of the hip brake so the doctor

had to relength it they used the bone bank so that they could graph it

together. She just got home last night and is bed ridden for two to

three months. So I am doing the best I can to help her with her needs

as well as take care of my own. I am pleased to say that I have

contiued to have good success with my stimulator and am grateful for it.

I will do my best to help you all with questions you might have with

getting a stimulator or if you just need someone to vent too. I do

care about each and everyone of you. I consider all of you my friends.

I hope your all getting the care that you need by your doctors. Please

let me or Mike know if there is anything we can do for you.

take care

Holly group Moderator

[Guest guest]

Hi Holly,

I know I am new but I would be glad to help out. I have experience as I am

presently moderator on a very busy group and also one that is very, very quiet

I would be delighted to help out though.

Thanks,

Jeff-NY/PA

Hello

Dear Stimulator Friends,

I am not able to have my shoulder surgery until Jan 17,2005. So I

will do my best to help support all of you. It's good to hear people

are having success with there stimulator's. I am about six months

out of mine and I am pain free. I go see my doctor for a follow up

in december. I owe my life to him for making it happen.

I have noticed when I don't use my stimulator like I should I pay

for it in doing my adl's. Please let me know if there is anything

that I can do for you. You are all in my thoughts and prayers.

If anyone would like to help me moderator email me and I will run it

by Mike I am still waiting to hear back from him.

take care

Holly Group Moderator

[Guest guest]

Hello Judi

Some years ago " watch and wait " was the gold standard, you were not treated

until you needed it. (Sounds like that might be the right approach for you,

given the history....)

Now, newly diagnosed patients are frequently given several diagnostic tests

(FISH, ZAP-70, others) that try to determine whether you will " smolder " for a

long time or whether something more aggressive needs to be done.

If you are an anxious person, and want to FIND OUT, you might check out these

tests. Insurance covers some, but perhaps not all. Depends on your policy.

The other way is to monitor your blood counts, lymphadenopathy, other

symptoms, and decide together with your oncologist if and when you need

something.

Several people on this list feel that low dose, controlled, Chlorambucil,

orally, is a good first course of treatment. Others believe in Rituxan, also

pretty

harmless, a monoclonal antibody with almost no side effects.

Tell us what your blood counts are, you'll get more advice than you'll know

what to do with.

[Guest guest]

Judi,

Congratulations, as my wife's " first hem/onc said " you have the most popular

kind of leukemia " . You have a million questions and one seems to be answered

implicitly in your post... " work in ICU/ER which is miles away from oncology " .

Many if not most oncologist are miles away from CLL since it is so rare in the

whole world of cancer. As a result it is very important you seek a consult with

one of the CLL Consortium Docs or someone who has special experience with CLL.

It is easy to contact the one most convenient to you and be seen in a short time

to establish a basis strategy for your course of treatment. Then use the CLL

doc in conjunction with your local guy for treatment should you need it.

As you will find, research is very active and much hope is here.

Good health and happiness,

Dan Hill

Hello

Hello everyone, I am Judi. I was just recently diagnosed with CLL and found

your group on the web. I have been reading your posts for a week or so and

thought I should introduce myself.

I am 53 and about a month ago found out I have this thing called CLL. I was

quite surprised, seems this happens to others, not me. The oncologist said I

have had it about 8 years already from veiwing my old CBC's I had at home. So

far my only symptoms are general fatigue and night sweats. My lymph nodes in my

neck are a bit swollen and I am told I have a swollen Spleen. Hard to tell if

the fatigue is from the fact that I am 53, or that I work nights in a hospital

or from the CLL, but after thinking about it, my 'age' seemed to catch up with

me at around age 45 or so... hmmm, about 8 years ago.. so I am figuring it is

probably the CLL. I am a RN, but my area of expertise is ICU/ER... miles away

from oncology. I was in the dark and needed answers, so here I am. The

treatment the oncologist prescribed is none, " See you in 6 months " , he said. I

am now trying to find out if that is the correct way to go f! or my disease

situation.

I enjoy reading the posts and hope over time I will be able to remember all

your names.

Kind Regards,

Judi

[Guest guest]

no document is with your post. Fransatinyblue2004@... wrote: Hello!Please notice the attached corrected document.

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Hi !

Do you know what kind of rods you had placed when you had your original

surgery? Do you know what levels you are fused? Most people who

develop flatback (though not all!!!) and need revision surgery are in

their 40s or 50s and had Harrington rods. The next generation of rods -

Luque rods - were contoured at the bottom to try to prevent the

development of flatback. However, it doesn't seem to have worked for

everyone! I had my first surgery at age 13, was fused T4-L4, and had

Luque rods put in. Looking at pictures of myself as early as age 25, I

was also standing with my knees bent to compemsate for flatback. I

just had revision surgery last summer at age 31. So, even though it

seems more uncommon in younger folks, it's definately not impossible!

Do you have copies of any of your x-rays? Or do you have a recent set

of them anywhere? If you are interested, I have posted my before &

after xrays here at (you may need to copy & paste it if the link is

broken, or go to Photos and click on the folder with my name):

http://health.ph./group//photos/v

iew/fb64?b=1 & m=f & o=0

It can be quite a journey sometimes to find a good revision surgeon,

but it is very much worth it rather than risking such a complication

surgery with someone who " wants to learn/practice " on you! I was lucky

and didn't have to travel very far, but some people have flown quite a

distance to see a surgeon. I don't think I have heard of anyone is

Arizona who specializes in flatback revisions. The names I've heard of

people talking about out in that general area of the country would be

Dr La Grone in Amarillo, TX, and the group (Dr Hu, et al) at UCSF in

California. I've also heard someone say very good things about a Dr

Kumar in Denver, CO.

If you have friends or family, or if you're willing to travel to

Chicago, St Louis, NYC, Boston, or SC, there are good surgeons there as

well with flatback experience that you could seek out for an opinion

about your spine. There are many more competent surgeons out there

that probably aren't talked about much. Some good qualifications to

look for would be to see if the doctor specializes in adult scoliosis

(not just pediatric, as the adult spine is different), and that they

have done quite a few of these flatback revisions from Harrington (or

Luque or whatever instrumentation you have) before (not just a couple,

but maybe 40-50? - I really don't know if there's a " magic " number that

makes a surgeon qualified or not).

Do you think you may have flatback? Do you lean forward? Even if it's

not flatback, please be sure that any surgeon you see has good

experience with adult spinal deformities, and don't let just any

orthopod " mess " with your spine.

>

> I had my rods placed when I was 15. I am now 29 and having sever pain

threw out my body. I wanted to get to know some people who have had

revision surgery to see what kinda progress they have made. I live in

Arizona and I don't know of a good revision surgen here. If any one

would like to e-mail me with any kind of information I would be very

grateful.

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

[Guest guest]

Hi thank you for responding rebecca. I have harrington rods and i'm fused all the way down except for my last three discs. my bars and screws go all the way down. I'm having unbearable pain behind both my shoulder blades. I'm getting a lot of the run around from different doctors. I'm not sure what to do. I feel very lost. One surgeon i saw wants to take my bars out and put nothing back. He says since im fused almost all the way down theres no need to put anything back in. I don't know if that is a good idea so im going for a second oppinion from another surgeon. So while i'm waiting and being passed from one doctor to another no one can do anything for my pain. It's to the point that I am desperate for help but don't really know what to do. I do have x-rays but am not sure how to post them. Would love to hear from you again or anyone who would like to share some knowledge and experiences.

Never miss a thing. Make your homepage.

[Guest guest]

Hi,

I'm really sorry to hear that you are in such pain. Did the doctor

you saw give you any information on what kind of shape your spine is

in above and below your current fusion (such as whether or not you

have degeneration of the discs there)? Hopefully the second surgeon

you will see will be of more help. Are the surgeons you are seeing

experienced with reconstructive spinal surgery for adults?

In the meanwhile, if you haven't yet discussed your pain with your

primary case physician, that might be a good idea.

Good luck and hope you will keep in touch with us on how you are doing,

loriannn

>

>

> Hi thank you for responding rebecca. I have harrington rods and i'm

fused all the way down except for my last three discs. my bars and

screws go all the way down. I'm having unbearable pain behind both my

shoulder blades. I'm getting a lot of the run around from different

doctors. I'm not sure what to do. I feel very lost. One surgeon i saw

wants to take my bars out and put nothing back. He says since im fused

almost all the way down theres no need to put anything back in. I

don't know if that is a good idea so im going for a second oppinion

from another surgeon. So while i'm waiting and being passed from one

doctor to another no one can do anything for my pain. It's to the

point that I am desperate for help but don't really know what to do. I

do have x-rays but am not sure how to post them. Would love to hear

from you again or anyone who would like to share some knowledge and

experiences.

>

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

> Never miss a thing. Make your homepage.

>

[Guest guest]

I saw your post and was curious about your pain in your upper back between your shoulder blades. I too have that pain. Everytime I mention it they want to do an EKG on my heart!!!*LOL* Oh well....... I've got my lower discs fused as well. They've also put in a medtronic pain pump. My pain management doctor is hoping that the medication will float up towards the area between my shoulder blades. My problem now is if they go any higher on the pain pump it compromises my breathing. I have asthma and a lung restriction (along with my old harrington rod w/distraction hooks and a lower 360). My spinal surgeon doesn't want to go in again. He says it's like opening a can of worms. So....... For the pain in my shoulder blades I keep my pump up as high as I can stand it, use biofreeze, moist heat, aqua therapy, patches on my back (dependent on what doctor

recommends at the time), breakthrough pain meds along with muscle relaxant, and Lyrica. During the peaks I'm in bed. I'm having to rest frequently these days and I try not to raise my arms over my head. I'm basically trying to wait it out until I can't take it anymore. My Pyical therapist tries to masage the area but she has to be very careful due to the sensitivity. Finally, if you're doctor isn't giving you the results you need despite repeated attempts of explaining to him that you're at your breaking point or in need of new ideas to control this pain then I'd find me another doctor. I'd also make sure that I'm seeing a Scoliosis specialist to start with. Have you seen a revision specialist? Or have you been referred to one? Just curious... But, in my situation I corrected what was causing the greatest amount of pain first and then I'm going through all the least envasive measures

before going under the knife again. That way I have no regrets if something goes wrong. This may be what your doctor is trying to do. On the other hand it may just be that he's not understanding what you are really trying to tell him. Hope this all made some sort of sence. Didn't get much sleep last night.... Y'all know the routine........*VBS* Take care. Hope you find the answers you're looking for. Zade......brandy aguero <hummingbirdaz2207@...> wrote: Hi thank you for responding rebecca. I have harrington rods and i'm fused all the way down except for my last three discs. my bars and screws go all the way down. I'm having unbearable pain behind both my shoulder blades. I'm getting a lot of the run around from different doctors. I'm not sure what to do. I feel very lost. One surgeon i saw wants to take my bars out and put nothing back. He says since im fused almost all the way down theres no need to put anything back in. I don't know if that is a good idea so im going for a second oppinion from another surgeon. So while i'm waiting and being passed from one doctor to another no one can do anything for my pain. It's to the point that I am desperate for help but don't really know what to do. I do have x-rays but am not sure how to post them. Would love to hear from you again or anyone who would like to share some knowledge and experiences. Never miss a thing. Make your homepage.

No Cost - Get a month of Blockbuster Total Access now. Sweet deal for users and friends.

[Guest guest]

Hi margo, no I have not seen a revision specialist. I have seen an orthopedic surgeon and will be seeing another one soon to get my second opinion on wheather or not I should have another surgery. I also do not reach up ward because it makes the pain worse. My primary care doctor will not perscribe me anything at all, he says I need to get something from a surgeon or a pain management center. which I am currently waiting for an appointment with one. They have recently sent me to have a ct millogram which was very painful and had to be done numerous times because they could not find an open area for the needle.

No Cost - Get a month of Blockbuster Total Access now. Sweet deal for users and friends.

[Guest guest]

Is your doctor the one calling for you to get into the pain management center?? If so I'd pressure then to get on the ball and get the earliest available and asked them to let the clinic know how much pain your in with no pain meds being prescribed. If it's you that is having to make the appointment I'd ask my doctor if he'd do it since doctors seem to have better luck at getting earlier appointments. If all that fails and you are reaching your breaking point I'd go to the ER which I have done that can get everyone on the move not to mention getting you some relief even though it may just be temporary. Outside of the above I use to use motrin with moist heat. A hot tub comes in handy. If you don't have one maybe one of the local gyms or friend/family member has one you can use. Biofreeze works wonders but without other meds I'm not sure if you will notice the difference. Rest. Rest.

and Rest. Did I say Rest??? I've found that if I lay on my side it's more comfortable with one fat pillow tucked against my back with one to hug in my front, one fat one between my legs and one that is contured or can be shaped to get my neck lined up does wonders. I learned this when I was pregnant and have never stopped. Only you will know if the pillow feels right. I have "my" pillows that I never leave home without. In fact, when I have to go to my surgeon or pain management doctor who are both over 2 hrs away I use them in the car in the back seat. I know I said rest but sometimes getting up and moving around to loosen things up helps but pace yourself and do the moist heat with rest to help. I've found that sitting especially to write or on my computer increases the pain in my upper back so be careful so that when you have to do it you only do it for a few minutes. On your bad days don't do any sitting that

you don't have to do. I do appologize that I'm not more help. For me, things got alot easier when I got to my pain management doctor. Not all pain management doctors are this understanding. I've found that using one that is familiar with alot of patients in our situation with the extensive fusions is alot more understanding because he sees what we go through everyday in his office. I can't stress that enough! Take care and I pray that got will give you strenth to endure until you find the relief you need. Zade.........brandy aguero <hummingbirdaz2207@...> wrote: Hi margo, no I have not seen a revision specialist. I have seen an orthopedic surgeon and will be seeing another one soon to get my second opinion on wheather or not I should have another surgery. I also do not reach up ward because it makes the pain worse. My primary care doctor will not perscribe me anything at all, he says I need to get something from a surgeon or a pain management center. which I am currently waiting for an appointment with one. They have recently sent me to have a ct millogram which was very painful and had to be done numerous times because they could not find an open area for the needle. No Cost - Get a month of Blockbuster Total Access now. Sweet deal

for users and friends.

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hello ,

I think Indy looks particularly cute!

Lida in London

-----Original Message-----From: [mailto: ] On Behalf Of wendy dutkaSent: 12 April 2008 17:31 Subject: Re: Re: Hi - reply as to numb skin

[Guest guest]

Thank you Indy is a sweetie she suffers from brittle

bones and broke both front legs before she was a year

old and has broken a few toes but touch wool shes been

OK for the last 18 months. she spent the first 2

months ether on my knee when I use a wheelchair or in

a baby's buggy but shes happy and in no pain so that's

all that matters and shes getting stronger. my dogs

are what keeps me going and makes me get up and do

thing even if I am in pain there much nicer then

people and don't care if your twisted or have lumps

and bumps in the wrong places lol

--- Lida Kraz <lidakraz@...> wrote:

> Hello ,

> I think Indy looks particularly cute!

>

> Lida in London

>

>

> Re: Re: Hi - reply as to

> numb skin

>

>

>

>

Dutka uk

Dislexsic not stuped

Rescue a sighthound today

Living with scoliosis and winning. most days

Its nice to be important but its more important to be nice.

http://www.flickr.com/photos/13452079@N06/?saved=1

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