New member

[Guest guest]

My son is fused T11 - L2 and after recovering from the surgery and with some

physical therapy he doesn't appear to have any flexibility loss

[Guest guest]

,

Remind us what the extent of your fusion is?

Donna

>From: Racine <lindaracine@...>

>Reply-Scoliosis Treatment

>Scoliosis Treatment

>Subject: Re: New Member

>Date: Sun, 29 Sep 2002 09:43:16 -0700

>

>Hi Roslyn...

>

>The restriction of bending is only a temporary thing. Until fusion has

>started to take hold, movement of the joint could cause non-fusion.

>Many doctors put their patients into a post-op TLSO brace as a reminder

>not to bend or twist. In addition, at least for me, the surgery made me

>feel very stiff. I regained my flexibility over time. Because I have a

>long fusion, I'm less flexible than I used to be, but not as inflexible

>as I had imagined.

>

>Regards,

>

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[Guest guest]

Donna...

I'm fused from T4 to L3.

--

[Guest guest]

Hi, thanks for clearing up some confusion I had regarding flexibility after

surgery. I wasn't sure if this was all across the board for this surgery or

depends on the particular case.

I have a thoracolumbar curve, and the last surgeon I saw about it, who also

said that surgery is probably inevitable for me sometime in the next several

years. He said my spine would be fused in the thoracic region, I think the

apex of the curve is at T9, but would only be fused at the very top of the

lumbar region, am not sure which vertebrae that would be, but i know it

wouldn't go as far down to the sacrum.

_________________________________________________________________

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[Guest guest]

In a message dated 9/30/2002 12:58:11 PM Central Daylight Time,

dreamblurr@... writes:

> I have a thoracolumbar curve, and the last surgeon I saw about it, who also

> said that surgery is probably inevitable for me sometime in the next

> several

> years. He said my spine would be fused in the thoracic region, I think the

> apex of the curve is at T9, but would only be fused at the very top of the

> lumbar region, am not sure which vertebrae that would be, but i know it

> wouldn't go as far down to the sacrum.

Well, I'm a kid, but I also have a thoracolumbar curve and I was fused T12-L2

2 months ago and I don't seem to have many problems with shaving, socks, etc.

even now. I still have excessive forward bending restrictions and twisting,

etc. but it's not really a problem, believe it or not.

SilverIdol

..:*they break in the kids*:.

..:*they've beaten the bitch*:.

..:*and that is all they feed on*:.

..:*:.:*:.

..:*<A

HREF= " http://www.picturetrail.com/gallery/view?p=999 & gid=877196 & uid=578874 & membe\

rs=1 " >pics</A>*:. .:*<A HREF= " http://www.shadesofgray.tk " >dollz</A>*:. .:*<A

HREF= " http://hometown.aol.com/silveridolstar/index.html " >about</A>*:.

[Guest guest]

> LB wrote:

>

> >> My husband did get off of all the pain meds while

> on Remicade but his body decided to react badly to remmy after a year

> or so. He almost went into cardiac arrest during his July infusion.

> He was up to 1 infusion per month and they had upped the dose. I

> guess when your body is done tolerating a particular drug.. It's just

> done. >>

>

> I can really relate to your husband's problems. I have much the same

> myself.

>

> At the moment I am undergoing Pamidronate infusions, I have one infusion

to

> go in this series. So far, it has helped some in the upper spine but

> definately not the SI Joints. The weather though has turned nasty, and we

> had our first snow of winter this afternoon and evening. While the stuff

is

> not saying around long, the drastic change in weather systems sidelined me

> today.

>

> I was very sorry to hear of your husband's cardiac arrest with the

Remicade.

> Like all new drugs, I think that they terribly overrate them before the

long

> term effects are known. At the cost of Remicade, I am astonished that he

> needed one infusion a month.

>

> Our prayers are with you both.

>

> +Dave

>

>

> ---

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>

>

>

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[Guest guest]

Fw: Re: New Member

> LB wrote:

>

> >> My husband did get off of all the pain meds while

> on Remicade but his body decided to react badly to remmy after a year

> or so. He almost went into cardiac arrest during his July infusion.

> He was up to 1 infusion per month and they had upped the dose. I

> guess when your body is done tolerating a particular drug.. It's just

> done. >>

>

> I can really relate to your husband's problems. I have much the same

> myself.

>

> At the moment I am undergoing Pamidronate infusions, I have one infusion

to

> go in this series. So far, it has helped some in the upper spine but

> definately not the SI Joints. The weather though has turned nasty, and we

> had our first snow of winter this afternoon and evening. While the stuff

is

> not saying around long, the drastic change in weather systems sidelined me

> today.

>

> I was very sorry to hear of your husband's cardiac arrest with the

Remicade.

> Like all new drugs, I think that they terribly overrate them before the

long

> term effects are known. At the cost of Remicade, I am astonished that he

> needed one infusion a month.

>

> Our prayers are with you both.

>

> +Dave

>

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.391 / Virus Database: 222 - Release Date: 20/09/2002

>

>

>

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.391 / Virus Database: 222 - Release Date: 20/09/2002

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

[Guest guest]

From what I've been reading, regarding others' experience with motion

restrictions, it seems the limitations involve higher level fusions. Just to

clarify, these aren't the physician imposed restrictions that we were braced

for after surgery, these are physically rigid restrictions - bones don't

bend.

Donna

.....

>Well, I'm a kid, but I also have a thoracolumbar curve and I was fused

>T12-L2

...

>.

>

_________________________________________________________________

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[Guest guest]

Hi SilverIdol...

Your fusion is pretty short compared to a lot of us. You have 3

vertebrae fused. I have 12, and many others have a lot more. Once

you're completely recovered from your surgery, you probably will have

very little loss of flexibility.

I'm glad you're doing so well.

Regards,

[Guest guest]

In a message dated 10/1/2002 12:38:47 PM Central Daylight Time,

dmdurgin@... writes:

> ust to

> clarify, these aren't the physician imposed restrictions that we were

> braced

> for after surgery, these are physically rigid restrictions - bones don't

> bend.

Yes, I know.

SilverIdol

..:*they break in the kids*:.

..:*they've beaten the bitch*:.

..:*and that is all they feed on*:.

..:*:.:*:.

..:*<A

HREF= " http://www.picturetrail.com/gallery/view?p=999 & gid=877196 & uid=578874 & membe\

rs=1 " >pics</A>*:. .:*<A HREF= " http://www.shadesofgray.tk " >dollz</A>*:. .:*<A

HREF= " http://hometown.aol.com/silveridolstar/index.html " >about</A>*:.

[Guest guest]

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

..............regarding others' experience with motion

> restrictions, it seems the limitations involve higher level fusions.

Dear Donna

I'm very sorry to tell you but I think your information is incorrect. I also

have a thoracolumbar curve and had my first surgery in October 1998, T10-L5.

All bending and twisting of the spine occurs in the lumbar spine, in other words

the last five vertebrae, plus their disks. If these are fused, you loose all

ability to twist and or bend. The only way you can bend is by bending your legs

at your hips and using your knees. You can never bend again in a " normal " way by

using your lower spine. The thoracic spine, to the best of my knowledge, is

static. It doesn't matter how many thoracic vertebrae are fused, apart from

stiffness and pain post op, it should not affect your flexibility. But the more

lumbar vertebrae that are fused, the less flexibility you have years post op,

and being fused to the sacrum, makes it even worse. I am not talking about

initial restrictions re " not trying to bend for 6mo post op " . I am talking the

long term effects of long fusions involving the lumbar spine and sacrum. The

only movement in the upper body is that accomplished with the movement of the

shoulders and head.

I will be four years post op in a couple of days and I know I'll never twist

again. Bending is still a challenge, although my legs are much stronger because

I have been using them more since my first surgery.

TAke care,

Sanette

www.sanette.net

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[Guest guest]

Sanette,

My initial fusion was L4-S1 and, yes, I was restricted in bending and

twisting. However, I was not nearly as restricted as I am now with the

T2-S1. I agree with you about the lumbar involvement in bending, twisting,

etc. But do not discount the thoracic involvement - it is not static. You

still curve those vertebra when bending, and also reaching etc. It is very

difficult to demonstrate on a normal person, but believe me, it makes a huge

difference.

Donna

>From: " Sanette - " <modimomusic@...>

>Reply-Scoliosis Treatment

>Scoliosis Treatment

>Subject: Re: New Member

>Date: Tue, 01 Oct 2002 19:45:10 -0500

>

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

>.............regarding others' experience with motion

> > restrictions, it seems the limitations involve higher level fusions.

>

>Dear Donna

>I'm very sorry to tell you but I think your information is incorrect. I

>also have a thoracolumbar curve and had my first surgery in October 1998,

>T10-L5. All bending and twisting of the spine occurs in the lumbar spine,

>in other words the last five vertebrae, plus their disks. If these are

>fused, you loose all ability to twist and or bend. The only way you can

>bend is by bending your legs at your hips and using your knees. You can

>never bend again in a " normal " way by using your lower spine. The thoracic

>spine, to the best of my knowledge, is static. It doesn't matter how many

>thoracic vertebrae are fused, apart from stiffness and pain post op, it

>should not affect your flexibility. But the more lumbar vertebrae that are

>fused, the less flexibility you have years post op, and being fused to the

>sacrum, makes it even worse. I am not talking about initial restrictions re

> " not trying to bend for 6mo post op " . I am talking the long term effects of

>long fusions involving the lumbar spine and sacrum. The only movement in

>the upper body is that accomplished with the movement of the shoulders and

>head.

>I will be four years post op in a couple of days and I know I'll never

>twist again. Bending is still a challenge, although my legs are much

>stronger because I have been using them more since my first surgery.

>TAke care,

>Sanette

>www.sanette.net

>

>

>--

>__________________________________________________________

>Sign-up for your own FREE Personalized E-mail at Mail.com

>http://www.mail.com/?sr=signup

>

>

>

>

>

[Guest guest]

Hi ,

Yes, your post came through just fine. I was one of the people who

told you about this group. I found it very interesting to read the

old posts here. Helps me a lot in knowing what to expect when I

eventually schedule my own revision surgery.

It sounds like you are doing pretty good with your recovery. I

should hope so, after 7 surgeries!!! Will be thinking positive

thoughts for your graft to hold. It's great to have the internet to

be able to communicate so easily with someone as far away as Italy

(I'm from New York State, USA). Now if they could just perfect the

medical profession so none of us would NEED support groups... alas,

wishful thinking on my part.

By the way, does anyone know who started the

group? I always feel like I'm scaring the younger scoliosis (non-

Harrington Rod) people when I write to that group.

Welcome to the group, and look forward to ocassionally hearing from

you.

loriann

[Guest guest]

Hi Everybody,

Whoops - I just sent the following message to the Scoliosis Medical Group -

meant to send it to the Feisty Flatbackers - oh well. I think the message

is applicable to both groups. Here it is:

" It's great to be part of the group. I really don't have many ideas about

how things should be run - just that we need a place where we can share

experiences and ideas.

I have been thinking about flatback - wondering if one of the reasons it

has been downplayed by the doctors so much is that they're men and most

flatback sufferers are women - therefore flatback is not particularly

important. I'm not much of a feminist but have noticed that research money

does not seem so forthcoming when women are involved (i.e., the lack of

serious HRT studies until recently). What do you think?

Take care. "

[Guest guest]

Hi Gayathri,

I also have cfs. Have had it for 14 years. I've done the Beck protocol.

Would suggest doing some liver cleanses first. A person's liver that has

cfs doesn't detox like a normal person's. Don't remember the explanation,

tho. That has made a lot of difference in my health. Also, don't forget to

drink the ozonated water. That helps with energy. The Beck BE (blood

electrification) unit will also increase the ATP by 500%. However, all this

stuff also causes die-off. The ozonated water helps witht the die-off, plus

doing the cleanses first so that your liver won't be over taxed. If you

can, start giving yourself some B12 injections. Good for stamina. If your

doctor won't give you a prescribtion, you can get them from Canada. Let me

know and I'll give you the #. Supplementing minerals helps a lot with the

pain; magnesium (orotates work the best), & coral calcium is great. It also

helps with the insomia. Colostrum is also good for pain and insomina. At

least in my case. Haven't had much luck with the brain fog, tho. However,

the other has really helped but not cured. Still I'm quite funtionable now.

Gail

new member

> Hi everyone

>

> I joined this list today. I have been very ill for 13 years-

> diagnosis is CFS, and chronic lyme disease(which I am not sure since

> I did not herx with antibiotics, been on it for 6 months and PCR was

> negative, western blot showed a few bands but not enough to be CDC

> positive).

> My main symptoms are extreme weakness, debilitating fatigue, flu

> symptoms on and off, muscle aches, severe brain fog, cognitive

> dysfunction, insomnia.

>

> I want to hear from folks who had personally used Beck's purifier,

> pulser, ozone generator and who have improved or cured from illness.

>

> I looked up the archives and I saw list of testimonials from people

> who were not part of the list

>

>

> I have just used colloidal silver which i make using a home CS

> generator unit for the past 4 months. i have not seen any noticeable

> improvement.

>

> I look forward to hearing from you all.

>

> Thanks

> Gayathri.

>

>

>

>

>

>

[Guest guest]

Thanks Gail for your reply!

I do take B12 shots (sometimes I dont due to lack of energy). I take

colostrum too. What kind of liver detox did you do? Is it Olive oil

and lemon drink?

I have a couple of questions for the group:

1. If i were to choose one among the following devices what would you

suggest to start with first?

BE unit

zapper

pulser

ozonater

I want to start with one of them and not spend my money in buying all

of them and realize its not working for me.

2. Also the BE, zapper, wont they harm the normal healthy cells too?

I read that they just target the parasites, bacteria, viruses etc.

What is the scientific proof that they are not harming the healthy

cells in the long run?

Recently, people advocate not even using electric shaver, blow

dryers, microwave because of electromagnetic field- wont they same be

applicable to such devices like Beck's unit and zapper?

Thanks

Gayathri.

> Hi Gayathri,

>

> I also have cfs. Have had it for 14 years. I've done the Beck

protocol.

> Would suggest doing some liver cleanses first. A person's liver

that has

> cfs doesn't detox like a normal person's. Don't remember the

explanation,

> tho. That has made a lot of difference in my health. Also, don't

forget to

> drink the ozonated water. That helps with energy. The Beck BE

(blood

> electrification) unit will also increase the ATP by 500%. However,

all this

> stuff also causes die-off. The ozonated water helps witht the die-

off, plus

> doing the cleanses first so that your liver won't be over taxed.

If you

> can, start giving yourself some B12 injections. Good for stamina.

If your

> doctor won't give you a prescribtion, you can get them from

Canada. Let me

> know and I'll give you the #. Supplementing minerals helps a lot

with the

> pain; magnesium (orotates work the best), & coral calcium is

great. It also

> helps with the insomia. Colostrum is also good for pain and

insomina. At

> least in my case. Haven't had much luck with the brain fog, tho.

However,

> the other has really helped but not cured. Still I'm quite

funtionable now.

>

> Gail

> new member

>

>

> > Hi everyone

> >

> > I joined this list today. I have been very ill for 13 years-

> > diagnosis is CFS, and chronic lyme disease(which I am not sure

since

> > I did not herx with antibiotics, been on it for 6 months and PCR

was

> > negative, western blot showed a few bands but not enough to be CDC

> > positive).

> > My main symptoms are extreme weakness, debilitating fatigue, flu

> > symptoms on and off, muscle aches, severe brain fog, cognitive

> > dysfunction, insomnia.

> >

> > I want to hear from folks who had personally used Beck's purifier,

> > pulser, ozone generator and who have improved or cured from

illness.

> >

> > I looked up the archives and I saw list of testimonials from

people

> > who were not part of the list

> >

> >

> > I have just used colloidal silver which i make using a home CS

> > generator unit for the past 4 months. i have not seen any

noticeable

> > improvement.

> >

> > I look forward to hearing from you all.

> >

> > Thanks

> > Gayathri.

> >

> >

> >

> >

> >

> >

[Guest guest]

Try a BE unit. Seems to work better than most others and it costs very little

to build! Go to:

E-mail Address(es):

\to see what it's all about and you can e-mail me off list for any information I

can give!

Bill

new member

>

>

> > Hi everyone

> >

> > I joined this list today. I have been very ill for 13 years-

> > diagnosis is CFS, and chronic lyme disease(which I am not sure

since

> > I did not herx with antibiotics, been on it for 6 months and PCR

was

> > negative, western blot showed a few bands but not enough to be CDC

> > positive).

> > My main symptoms are extreme weakness, debilitating fatigue, flu

> > symptoms on and off, muscle aches, severe brain fog, cognitive

> > dysfunction, insomnia.

> >

> > I want to hear from folks who had personally used Beck's purifier,

> > pulser, ozone generator and who have improved or cured from

illness.

> >

> > I looked up the archives and I saw list of testimonials from

people

> > who were not part of the list

> >

> >

> > I have just used colloidal silver which i make using a home CS

> > generator unit for the past 4 months. i have not seen any

noticeable

> > improvement.

> >

> > I look forward to hearing from you all.

> >

> > Thanks

> > Gayathri.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Gayu,

I did the liver cleanse. However, I personally think it can be too

hard on somebody who is extremely ill. CFS can make you that ill. I don't

know how ill you are from it, but might want to just try adding milk thistle

to your diet until you are feeling strong enough to do the cleanse.

Colostrum is also a funny thing. I have found that the brand, Immune Tree,

works better than other brands. It is taken from the first milking and

seems to be more effective for me. And others have mentioned the same

thing.

How much of the B12 injections are you taking? People with cfs need way

more than what is usually recommended. I don't need them anymore, but they

were great when I did use and need them. The first thing that started my

recovery was the magnesium orotates. Actually, it was the shots first. I

use to take magnesium shots until I discovered the orotates. They would

just unknot all those muscles and help me sleep. It was great. Do you get

muscle spasms? Next to that was the B12 injection. I would take two 1,000

mcg. to maintain. But in the beginning it was as high as 5,000 mcg. twice

weekly. That's a lot. It was also the thing that finally got me to stop

relapsing.

I found your question about just buying one unit and which one very hard.

But if I had to choose one, I would choose the BE. Then I would find a more

inexpensive means to get some oxygen as in drinking the 35% food grade H202

or homozon. But if I could afford it, I would really go ahead an get the

ozone generator.

And regarding your question about it damaging the healhty cells, I would

have to say no. And I don't have the scientific background to back that up

all I can say it there are just too many of us who have benefited from it

for it to be a danger to us. Now, maybe if you are like myself and don't

know anything about electronics and made your own unit wrongly, then I could

see how there would be a possibility of it damaging you. Maybe Russ from

Sota can comment on this. His company has done much research on the Beck

Protocol and some of the units have even been approved as medical devices in

Canada. But I don't even know if he's reading this right now. Any others

want to answer this question.

Gail

----- Original Message -----

From: <gayu_alt@...>

> Thanks Gail for your reply!

> I do take B12 shots (sometimes I dont due to lack of energy). I take

> colostrum too. What kind of liver detox did you do? Is it Olive oil

> and lemon drink?

>

> I have a couple of questions for the group:

> 1. If i were to choose one among the following devices what would you

> suggest to start with first?

> BE unit

> zapper

> pulser

> ozonater

>

> I want to start with one of them and not spend my money in buying all

> of them and realize its not working for me.

>

> 2. Also the BE, zapper, wont they harm the normal healthy cells too?

> I read that they just target the parasites, bacteria, viruses etc.

> What is the scientific proof that they are not harming the healthy

> cells in the long run?

> Recently, people advocate not even using electric shaver, blow

> dryers, microwave because of electromagnetic field- wont they same be

> applicable to such devices like Beck's unit and zapper?

>

> Thanks

> Gayathri.

[Guest guest]

I had the aspirin desensitization at Scripps clinic at the end of October 2002. It is a VERY controlled environment and the initial doses of aspirin are very small so the risk is quite minimal. The aspirin desensitization has a 87% success rate which means everyone comes away desensitized but 87% see any significant improvement in their symptoms. Unfortunately, so far, I am in the 13% who see no improvement in their symptoms. I will continue taking the aspirin for at least another 6-8 months just to see if anything happens.

Rob

new member

I must say, I was quite surprised to see that samter's actually has a group - though I'm very pleased that there is one. I've had samters for 3 years now, and have had 2 polyp removals in these 3 years (the last just this past Tuesday).

My doctor has told me about the aspirin desensitization, but it just sounds frightening to me. I'd like to know more about the process, results, success/failure stories, etc.. It's hard living without my smell and taste, but good to know that I'm not alone in this!

[Guest guest]

hey bonnie

tell us more. The juicy stuff I mean. Where you is who you doing all that. Teri has not yet sent her jokes for the day. Just cause she fell and got alittle banged up, she slowed a bit but she be going strong again, I hope. I am the idiot of the group. Like to have different personalitys to suit my need. Nice to have another apple in the barrell so to speak. Hang in and get a load of some of these posts.

See ya, Hugh Butch Dick and many others.

[Guest guest]

Hmm.... details. LOL

I am 29 I have two kids

I live in Virginia

I am loosing my hair. LOL

I get my blood drawn today.

I have chronic depression and anxietry so I take mental meds and at the hospital this weekend I got a way cool Demerol IV DRip.

Bonnie

My Homepage~March 2003~

[Guest guest]

Hi Bonnie and welcome. I just started the peg combo and today is my third shot. So far it has been OK. I was really sick from the first shot. LaDonna

[Guest guest]

Hi Ladonna... I get sick after every shot and throughout the week as well. LOL

But only 5 more months.

Bonnie

[Guest guest]

Well, today I took my shot at 10:00 am at the clinic and it is now 5:30 and I have a fever of 101. The ache has started but most of all I hate the metal taste in my mouth. My skin drying out before my eyes and I have these rashes. I have five months and one week left. LaDonna

[Guest guest]

Hello Helen,

Sounds as though you have been through quite a bit! I'm a good deal older

than you, and had my surgery at 57. But the surgery plucked you from a

wheelchair? That is marvelous! I'm not in a wheelchair, but do use an

electric scooter for any distance stuff, or where you have to sort of

" loiter " on your feet, like shopping. You are right. If I keep moving, I'm

better. In fact, I do use a treadmill. I don't run, and I hold on on both

sides, but it helps me a bit. I'm sure you will have many more answers to

your post. I wish you well and hope that we will hear from you again!

Sincerely,

Carole