Welcome to the group

[Guest guest]

Hi Jana, welcome to the list. I think one of the issues with steroids is

long term use of the drug. It is a good sign that Robbie is growing albeit at

a slow rate- but I believe that the streroids contribute to the slow growth.

My son Elliot has been on Enbrel with no apparent success. He has systemic

JRA

Our Ped. Rheum. seems to think that it has been more successful for

polyarticular JRA. He has one patient who is a " systemic " with excellent

results- however he believes that she may really not be a systemic after all.

What I really wanted to get at is- if your son was doing well on the

methotrexate why not resume taking it? If he does well with it again, maybe

try getting off of the steroids before the mtx. I believe the studies show

that the long term effects of the steroids are worse than the long term

effects of mtx.

I hope that things will be on the upswing.

Rena

[Guest guest]

Rena,

Thank you for the welcome and the insight.

Jana

[Guest guest]

Erabet,

Welcome. I went untreated for most of my life. I had

surgery at the age of 59 last year A/P T2-L5. It

sounds like you need to go back to a scoliosis

specialist for a total check-up. So many people with

harrington rods have had to return to surgery. My

rods are titanium with many hooks and four very long screws.

=====

Jeanette

__________________________________________________

[Guest guest]

In a message dated 8/14/01 4:01:22 PM Central Daylight Time,

erzebet@... writes:

> I joined this list

> because I have only known one other person who has had this surgery

> and problems, and I only knew her briefly. I need to know that others

> are out there as I am quite terrified right now.

>

>

Welcome to the group. It has been a good list to learn from. I had never met

anyone else that had had any problems and only knew one other person that had

even had surgery and that was in my early teens. I am 32 and had my rods

placed when I was 12.

[Guest guest]

Hi there. Last time I tried to send a message to the group, it

bounced back at me. I have recently been experiencing a disturbing

amount of back pain which I know is related to my scoliosis. I had

" corrective " surgery at age 14, a harrington rod fused in there among

other things and have had virtually no trouble at all since coming

out of my cast ten months later, other than the emotional upheaval it

caused. Now I am 34 and terrified. My curve seems to be worsening

though I don't see how that is possible and I hurt a lot. I have yet

to go to the doctor but a visit is imminent. I joined this list

because I have only known one other person who has had this surgery

and problems, and I only knew her briefly. I need to know that others

are out there as I am quite terrified right now.

Nice to be welcomed.

Erzebet

--

[Guest guest]

Jeanette,

I do intend to go to a doctor as soon as I possibly can. I have to

talk to my primary doc as I don't even know where to begin. I have no

idea what condition my back is in, I haven't had it checked since a

year or so after my surgery, and I am not going to be very pleased if

I am told that more surgery is necessary. That this was done to me in

the first place makes me angry; I can't imagine what more of the same

would be like.

Erzebet

>Erabet,

>

>Welcome. I went untreated for most of my life. I had

>surgery at the age of 59 last year A/P T2-L5. It

>sounds like you need to go back to a scoliosis

>specialist for a total check-up. So many people with

>harrington rods have had to return to surgery. My

>rods are titanium with many hooks and four very long screws.

>

>=====

>Jeanette

--

[Guest guest]

Hi! Just wasn't so sure how to do that! Have received quite a few notes

people have written lately, though. Had Harrington rod surgery in 1992 at

57, after it was discovered that my scoliosis had rapidly progressed after

going untreated for many years. Had a rough time initially, but am doing

quite well at this time. Have no one nearby who has anything even a little

like the problems that go with the short stature, etc., so belonging to a

group seems like a great thing to do. Thank you for the welcome! Carole

----Original Message Follows----

From: " Leger " <legerpj@...>

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Welcome to the group

Date: Tue, 14 Aug 2001 20:05:42 -0000

There are a lot of new people out there recently. If you feel

comfortable and want to introduce yourselves please do so. We can't

help if we don't know you.

Your friendly moderator.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

In a message dated Thu, 16 Aug 2001 8:52:36 AM Eastern Daylight Time, " Carole

Myron " <carolemyron@...> writes:

<< Hi! Just wasn't so sure how to do that! Have received quite a few notes

people have written lately, though. Had Harrington rod surgery in 1992 at 57,

after it was discovered that my scoliosis had rapidly progressed after going

untreated for many years. >>

++++++++++++++++

Hi Carole. Are you sure that the type of rods used in your surgery in 1992 were

Harringtons?? People often use " Harrington " generically when talking about

spinal instrumention. After the early/mid 1980's (about 1984), it was highly

unusual that Harrington Rods were used seeing that better instrumentation types

was developed at about that time.

S.

[Guest guest]

First off welcome to all and while I think I have intoduced myself I will do so

..My name is Jessie

and I am mom to a great girl Sara aged 11 who has been diagnosed this past April

with a 46 degree

right thoracic curve. No surgery as of yet. She is about 5'2'' has about 9-12

months left of

growth so we are doing with approval a wait and see approach til end of October

when she will be

imaged again.

I am most curious about rod types. The rods they use now, titanium what makes

that different than

Harrington etc.. it was explained to me that whether steel or titanium the

difference in trouble

down the road is if the spine has fused properly.

Jessie

[Guest guest]

Hi Jessie...

I believe that all of the newer (non-Harrington rod) systems come in

both stainless steel and titanium. The advantage to using titanium

would be that spine imaging can be done by MRI if necessary. Although

someone with stainless steels rods can have an MRI, it will not be of

sufficient quality to read the image close to the rods. The advantages

to stainless steel are that it's a lot less expensive and it's less brittle.

There are quite a few spinal systems in use today. Usually, a surgeon

uses one or two with which s/he's comfortable. Since they all use the

same concept (bendable rods with segmental fixation), it shouldn't

really make a difference for the consumer, which system is used.

Hope that answers your question.

Regards,

[Guest guest]

Hi , yes it does answer the question. Now what about the hooks vs screws

issue...seems these

docs we are meeting are pretty opinionated on that issue as well. Is it the same

just what they

are comfortable using. We have been told that hooks can slip and cause nerve

damage compared to

the screws...you are so informative , thanks in advance Jess

--- Racine <lindaracine@...> wrote:

> Hi Jessie...

>

> I believe that all of the newer (non-Harrington rod) systems come in

> both stainless steel and titanium. The advantage to using titanium

> would be that spine imaging can be done by MRI if necessary. Although

> someone with stainless steels rods can have an MRI, it will not be of

> sufficient quality to read the image close to the rods. The advantages

> to stainless steel are that it's a lot less expensive and it's less brittle.

>

> There are quite a few spinal systems in use today. Usually, a surgeon

> uses one or two with which s/he's comfortable. Since they all use the

> same concept (bendable rods with segmental fixation), it shouldn't

> really make a difference for the consumer, which system is used.

>

> Hope that answers your question.

>

> Regards,

>

>

__________________________________________________

[Guest guest]

Hi Jess...

I'm not actually certain about what goes into a surgeon's decision to

use hooks v. screws. I see a lot of x-rays with both, so I would assume

that some surgeons think that hooks are better in certain situations and

screws are better in others. I have heard that screws are more secure

than hooks. If you have a skilled surgeon, than I would go along with

their opinion. There is a fairly vocal contingent of people who have

been hurt by pedicle screws. If you hear from them, I suggest that you

do research before discarding the option.

Regards,

[Guest guest]

Hi ,

I was told that I was receiving Harrington rods and Lucque wires. Does that

make sense? Carole

----Original Message Follows----

From: RSSSCOLIOSIS@...

Reply-Scoliosis Treatment

<Scoliosis Treatment >

Subject: Re: Welcome to the group

Date: Thu, 16 Aug 2001 10:18:39 EDT

In a message dated Thu, 16 Aug 2001 8:52:36 AM Eastern Daylight Time,

" Carole Myron " <carolemyron@...> writes:

<< Hi! Just wasn't so sure how to do that! Have received quite a few notes

people have written lately, though. Had Harrington rod surgery in 1992 at

57, after it was discovered that my scoliosis had rapidly progressed after

going untreated for many years. >>

++++++++++++++++

Hi Carole. Are you sure that the type of rods used in your surgery in 1992

were Harringtons?? People often use " Harrington " generically when talking

about spinal instrumention. After the early/mid 1980's (about 1984), it was

highly unusual that Harrington Rods were used seeing that better

instrumentation types was developed at about that time.

S.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

========Original Message========

Subj: Re: Welcome to the group

Date: 8/18/01 11:56:11 AM Eastern Daylight Time

From: lindaracine@...

Reply-to: Scoliosis Treatment

Scoliosis Treatment

BCC: RSS SCOLIOSIS

Sent from the Internet

Hi Carole...

Yes, it's possible that you have Harrington rods with Luque wires.

Would you mind sharing with us who your surgeon was?

Regards,

++++++++++++++++

, after 1984, isn't any use of Harrington Rods a bit unusual due to

their lack of segmentation, inability to be bent, and the risk of flatback?

S.

[Guest guest]

Hi Carole...

Yes, it's possible that you have Harrington rods with Luque wires.

Would you mind sharing with us who your surgeon was?

Regards,

[Guest guest]

Hi ...

I'm told that there are unusual, specific circumstances under which

Harrington rods would be the best choice.

Regards,

[Guest guest]

, My surgeon was Lipson, M.D., and it was done at Brigham and

Women's Hospital in Boston. He has since moved to Beth Israel Hospital in

Boston, where he is Chief of Ortho. My curvatures are very severe, and the

surgery was done, not for correction, but more for stabilization. Hope this

helps. Carole

----Original Message Follows----

From: RSSSCOLIOSIS@...

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Re: Welcome to the group

Date: Sat, 18 Aug 2001 13:06:01 EDT

========Original Message========

Subj: Re: Welcome to the group

Date: 8/18/01 11:56:11 AM Eastern Daylight Time

From: lindaracine@...

Reply-to: Scoliosis Treatment

Scoliosis Treatment

BCC: RSS SCOLIOSIS

Sent from the Internet

Hi Carole...

Yes, it's possible that you have Harrington rods with Luque wires.

Would you mind sharing with us who your surgeon was?

Regards,

++++++++++++++++

, after 1984, isn't any use of Harrington Rods a bit unusual due to

their lack of segmentation, inability to be bent, and the risk of flatback?

S.

[Guest guest]

Hi Carole...

I don't know your surgeon, but believe it's entirely possible that he

chose Harrington rods because they were the best choice in your situation.

Regards,

[Guest guest]

Hi - Actually, that is what I had thought, as well. It was someone in

the group who had questioned the use of these rods; - ?you? I do enjoy the

notes from this group! Carole

----Original Message Follows----

From: Racine <lindaracine@...>

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Re: Welcome to the group

Date: Mon, 20 Aug 2001 11:39:41 -0700

Hi Carole...

I don't know your surgeon, but believe it's entirely possible that he

chose Harrington rods because they were the best choice in your situation.

Regards,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi -thank you for the welcome. what kinds of things to you do?

Perhaps we can share & exchange recipes depending on what you do!!! im

looking forward to meeting nice people here too! So far everyone has

been wonderful!!!! Hugs-Misty

http://community.webtv.net/mpw98/doc

http://community.webtv.net/mpw98/doc0

http://community.webtv.net/mpw98/ForeverYoursATouch

[Guest guest]

Hi Misty,

I've made some basic soaps for rebatching. Then I made some lavender soap

using goat milk and shredded basic soap and it melted very nicely. I added

lavender flowers and Lavender EO and also a few drops of red and blue

Wilton's Oil Based Candy Colors (I read somewhere to try these) to make a

lavender color. It turned out real nice looking and smelling great and it

poured nicely into the molds as well. I was going to take them out of the

molds after 24 hours but they felt too soft, so I waited another 24 hours

and tried again. Still too soft. Waited still another 24 hours. Not as soft

but I still couldn't take them out they were separating, so I put them in

the freezer for about an hour or so. I waited a little while then tried

taking them out, but it was a little difficult. I had to smooth them out

with my fingers, but they were okay. Still smelled great and the color was

good. I left them to dry but in a couple of days they started to look

greenish. Horrors!! and still kinda soft. As the days went on they got

greener! but not as soft. They still smell good but with a slight other

smell....the goat milk, but I'm told that would disappear. Do you have any

idea why they turned green?? I don't have central air in my house and I

don't like to leave the window unit on when I go to work so it got hot in

here when I took the soaps out to dry. Could the heat have affected the goat

milk??

Thanks for any info on this problem,

[Guest guest]

Hi ,

Its very likely that the ph balance in your soap was totally incompatible

with the colourings you used. There is a red that goes green, and one that

stays red.

Candy colours are usually oil based, and you would likely do better with

water based colours.

Well, Naturally

http://www.wellnaturally.com

At 10:58 AM 9/12/2002 -0500, you wrote:

>Hi Misty,

>I've made some basic soaps for rebatching. Then I made some lavender soap

>using goat milk and shredded basic soap and it melted very nicely. I added

>lavender flowers and Lavender EO and also a few drops of red and blue

>Wilton's Oil Based Candy Colors (I read somewhere to try these) to make a

>lavender color. It turned out real nice looking and smelling great and it

>poured nicely into the molds as well. I was going to take them out of the

>molds after 24 hours but they felt too soft, so I waited another 24 hours

>and tried again. Still too soft. Waited still another 24 hours. Not as soft

>but I still couldn't take them out they were separating, so I put them in

>the freezer for about an hour or so. I waited a little while then tried

>taking them out, but it was a little difficult. I had to smooth them out

>with my fingers, but they were okay. Still smelled great and the color was

>good. I left them to dry but in a couple of days they started to look

>greenish. Horrors!! and still kinda soft. As the days went on they got

>greener! but not as soft. They still smell good but with a slight other

>smell....the goat milk, but I'm told that would disappear. Do you have any

>idea why they turned green?? I don't have central air in my house and I

>don't like to leave the window unit on when I go to work so it got hot in

>here when I took the soaps out to dry. Could the heat have affected the goat

>milk??

>Thanks for any info on this problem,

>

>

>

>

>

>

>

[Guest guest]

Thank you for the warm welcome Sydney,

The thing that has helped me to clear the picture of lyme disease is

the study of the pathogenesis or how it causes disease.

This recent work by done in Tulane indicates that the bacterial

lipoproteins (BLPs) of borrelia are responsible for much of the

pathogenesis of neuroborreliosis:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12938230 & dopt=Abstract

So, IMO, we are dealing with a disease that is primarily caused by

these fat-soluble toxins.

This also helps clarify the clinical picture we see with this

disease.

This is also the reason why abx are only part of a comprehensive

therapy. There are many facets we must address in a complete

regimen and it includes ways to eliminate these depots of fat-

soluble toxins.

This one reason I joined this group. Detoxifying fat-soluble

biotoxins is important for all of us.

For example, glutathione's ability to detoxify appears to be an

important factor with regards to therapy.

>

>

> Hi ,

>

> Welcome to the group.

>

> I have not posted in some time. I have been just lurking around

and

> reading about many of my fellow CFID'ers that have found they

tested

>

> positive for Lyme. I have been feeling poorly since being out of

> Kutapressin and no longer being able to get it. Now I have this

URI

> that I have had for almost two months.

>

> After reading your introduction I wanted to touch base with you

about

> Lyme. I was officially diagnosed with CFIDS in 1998 and

>

> started seeing Cheney in 2001. I have been sick since 1989. I went

> from one doctor to another, you know the whole bit. My family all

> thought I was crazy.

>

> After much research I thought I knew I had CFIDS and found a

doctor

> who could diagnose me but, I never thought of Lyme. Being from

North

>

> Carolina no one ever mentioned it. All these years I had never

been

> tested for Lyme and had thought that after going through a million

> different tests

>

> that Cheney had requested, that I had tested for Lyme Disease but,

> had not. This past summer after a walk at Carolina Beach State

>

> Park, I was bitten by a small tick that made a fairly large red

mark

> on my stomach, not a bulls eye.

>

> I requested that my PCP do a Western Blot from Igenex. It came

back

> positive. I started seeing a LLMD and he believes I contracted

> Borrelia back in

>

> 89. Later Lyme tests requested by my LLMD came back negative but,

> with several

>

> markers for Lupus. Several times in the past I have tested

positive

> for EBV and HHV-6a. I must say I am confused about the whole thing.

>

> I wonder if I tested false positive for Lyme. So far oral

antibiotics

> are not making much of a dent. I have not done IV abx.

>

> I would like to know what you have tried and what is working for

you.

> I would appreciate any input you can give.

>

> I do believe ticks are becoming a very severe problem in my area

if

> not all over the US. I have a small yard in town and live with

three

> small terriers.

>

> I have never seen so many ticks in my life. I hate using chemicals

> but, feel I must treat my yard and use Frontline Plus on my dogs.

>

> Thanks,

> Sydney Christian

[Guest guest]

well, here I am.. talking everyone's ears off.. and

hoping to see some others here tonight too

Larry Gullahorn wrote:

I would like to take this moment

to welcome new member davyrileysongs to the group. WE ALL WELCOME YOU

AND LOOK FOR WARD TO HEARING FROM YOU IN THE NEAR FUTURE.

ONCE AGAIN ,WELCOME

REMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND

[Guest guest]

Thank you for the welcome. At the moment I just want to enjoy the

sunrise. I love the sunrise.

Regards-

Hal

> I would like to take a moment to welcome the following to the

group.

> WELCOME TO :turboredcart and to vpohre.

> We all look forward to hearing from you and to try and be of help

to you in any way that we can.

> We all share one thing on common.

> We all suffer from chronic pain due in the neck or back[or both]

due to injury or disease.

> So,welcome to the group. Let us hear from you.

> Until then,

> MAY YOU ALL HAVE A BETTER DAY TOMORROW THAN YOU HAD TODAY.

> TAKE CARE AND BE SAFE.

> LARRY

>

>

>

> REMEMBER ALL OF OUR MEN AND

> WOMEN IN THE ARMED SERVICE OF OUR NATION

> PRAY THAT THEY MAY BE SAFE

> AND SOUND IN BODY AND MIND