New to group

[Guest guest]

Hi, Kim.We are in GA and claim religious exemption even though we are not particularly religious. You may get some helpful tips here: http://www.know-vaccines.org/exemptionFAQ.htmlGood luck!From: zoya1989sa <eliigor@...>Subject: new to groupVaccinations Date: Monday, January 25, 2010, 9:30 PM

Hi. I am a single mom with an 18 month old son adopted from Ethiopia. He has had several series of vaccines which he got before I had him. Unfortunately not only did he get these vaccines, polio,DTaP, Hep B in a place where the safety and cleanliness of the vaccines are in question but he got them much closer together than the schedule suggests. So, those were out of my control, can't really spend time fretting about that. Meanwhile I thought I had chosen to do an alternative schedule so i could at least spread them out. It's not an option for me to home school and I was thinking that I would have to give them to him eventually if I was going to get him into preschool or regular school. I'm getting more and more afraid of vaccines and I'd rather not give him any more. Here in North Carolina we only have a medical and a religious exemption. I will try to get a religious exemption even though I'm not religious at all. (I'm thinking of

putting him in two day a week preschool when he is 3). I have a question for you all. I want to start a campaign to get a philosophical exemption allowed here in North Carolina. I don't have any idea how to go about it. The states that do have it, how did they get it? Who makes that decision? What would be the first step? I see other arguments other than just vaccine safety and parental choice. I think that allowing one person to get out of vaccines because they have a belief and not allowing the next person (ie me) who chooses not to believe do the same is religious discrimination which of course is illegal. I've been getting more and more worked up about this and it infuriates me. Getting a philosophical exemption would at least allow an option to people. Thanks for your help.

Kim

[Guest guest]

I gave her email address to you in the email I wrote below...........did you see

all the info I sent?

WeRPave@...

sheri

> >> Hi. I am a single mom with an 18 month old son adopted from

> >> Ethiopia.

> >

> >

> > welcome

> >

> >> He has had several series of vaccines which he got before I had

> >> him. Unfortunately not only did he get these vaccines,

> >> polio,DTaP, Hep B in a place where the safety and cleanliness of

> >> the vaccines are in question but he got them much closer together

> >> than the schedule suggests. So, those were out of my control,

> >> can't really spend time fretting about that.

> >

> > no you can't

> >

> >> Meanwhile I thought I had chosen to do an alternative schedule so

> >> i could at least spread them out.

> >

> > All vaccines are dangerous - spread out, singly or in combo

> > and NO vaccine gives immunity

> >

> >> It's not an option for me to home school and I was thinking that

> >> I would have to give them to him eventually if I was going to get

> >> him into preschool or regular school. I'm getting more and more

> >> afraid of vaccines and I'd rather not give him any more. Here in

> >> North Carolina we only have a medical and a religious exemption.

> >

> > It is an easy religious exemption and better to have that actually

> > than philosophical - it will be harder to take that one away

> >

> >> I will try to get a religious exemption even though I'm not

> >> religious at all.

> >

> > You don't have to be religious................

> >

> > http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/

> > northcarolina.aspx

> > If the bona fide religious beliefs of an adult or the parent,

> > guardian or person in loco parentis of a child are contrary to the

> > immunization requirements, the adult or the child shall be exempt

> > from the requirements. Upon submission of a written statement of

> > the bona fide religious beliefs and opposition to the immunization

> > requirements, the person may attend the college, university, school

> > or facility without presenting a certificate of immunization. No

> > child shall be exempt from the requirements of immunizations for

> > the case of a personal belief or philosophy of a parent or guardian

> > not founded upon a religious belief.

> >

> > where do your ''religious beliefs' end and your beliefs about life

> > begin? Aren't they the same thing.

> >

> > You just write a state saying:

> >

> > I object to vaccines for ________________________. I have bona

> > fide religious beliefs and oppose the immunizatoin requirements.

> >

> > That's it - no further statements. They can't ask you questions

> > about those beliefs. That is not in the law. You just have to

> > make a statement. No explanation

> >

> >

> >

> >

> >> (I'm thinking of putting him in two day a week preschool when he

> >> is 3). I have a question for you all. I want to start a campaign

> >> to get a philosophical exemption allowed here in North Carolina.

> >> I don't have any idea how to go about it. The states that do have

> >> it, how did they get it? Who makes that decision? What would be

> >> the first step? I see other arguments other than just vaccine

> >> safety and parental choice. I think that allowing one person to

> >> get out of vaccines because they have a belief and not allowing

> >> the next person (ie me) who chooses not to believe do the same is

> >> religious discrimination which of course is illegal. I've been

> >> getting more and more worked up about this and it infuriates me.

> >> Getting a philosophical exemption would at least allow an option

> >> to people. Thanks for your help.

> >

> >

> > The religious exemption is an option to all. It doesn't say you

> > have to be a member of a specific church

> >

> > Jillani is the director of the vaccine dangers group in NC

> >

> >

> > People Advocating Vaccine Education: www.vaccineeducation.com

> >

> > vaccine exemption page

> > http://www.vaccineeducation.com/exemptions-NC.htm

> >

> > contact and have a chat with her

> >

> > WeRPave@...

> >

> > P.O. Box 36701

> > Charlotte, NC 28236

> > USA

> >

> > again, welcome

> > Sheri

> >

> > listowner

> > Sheri Nakken, R.N., MA, Hahnemannian Homeopath

> > Vaccination Information & Choice Network, Washington State, USA

> > Vaccines - http://vaccinationdangers.wordpress.com/

> > Vaccine Dangers, Childhood Disease Classes & Homeopathy Online/

> > email courses - next classes start January 27 & 28

> > http://www.wellwithin1.com/vaccineclass.htm or http://

> > www.wellwithin1.com/homeo.htm

> >

> >

>

[Guest guest]

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having surgery. 

It was over an 8 hour surgery and I was in the hospital for 8 days.  I have been

on pain management since.  Anyone considering this surgery as an adult should do

extensive research.  I don't want to scare anyone, but my experience has been

very bad.  I was fused from T-1 to L-5 using harrington rods, screws, hooks,

crosslinks, etc.  My Trev. muscle in the upper back has cause tremendous pain in

the form of muscle spasms.  The Vertebre and disc L-5 to S-1 are my most recent

problems.  I had to leave work in 2006 and go on permanent disability causing me

to lose everything including my marriage.  Another problem with that comes with

this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

Deborah,

I am very sorry to hear about your situation, and do understand a great deal of

what you said. I had surgeries (2 six weeks apart due to loose hooks) in 1996

with Acromed Instrumentation (this is a generic version of Texas ish Rite

Hospital System Instrumentation). I have been on disability since June 2008

(Social Security Disability Insurance (SSDI) and Federal Employee Disability

Retirement).

One point that you said I do want to comment about. I would be EXTREMELY

surprised if you have Harrington Rods (many incorrectly use " Harrington Rods " in

generic terms). In almost all cases Harrington Rods have not been used since

about 1984. Harrington Rods have been known to cause a condition called

" Flatback Syndrome " in patients who had spinal fusion surgeries in the 1960's,

1970's, and early 1980's. Harrington Rods did not take into account the natural

lordosis of the lower back. Hence, the term " Flatback Syndrome " .

S.

********************************************************************************\

********************************************************************************\

**********************************************************************

In a message dated 02/05/10 19:48:31 Eastern Standard Time, dmeadors73@...

writes:

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002. I've been told that children have much better results

from this surgery. Mine was an absolute nightmare. I had double curves ( " S " )

with a twist in the middle of my spine. within 4 months i was having surgery.

It was over an 8 hour surgery and I was in the hospital for 8 days. I have been

on pain management since. Anyone considering this surgery as an adult should do

extensive research. I don't want to scare anyone, but my experience has been

very bad. I was fused from T-1 to L-5 using harrington rods, screws, hooks,

crosslinks, etc. My Trev. muscle in the upper back has cause tremendous pain in

the form of muscle spasms. The Vertebre and disc L-5 to S-1 are my most recent

problems. I had to leave work in 2006 and go on permanent disability causing me

to lose everything including my marriage. Another problem with that comes with

this is severe depression. Please, get more than one opinion, use a surgeon who

specializes in the spine and pray. It has been a long and painful experience

for me. They already told me that a wheelchair was in my near future and

possibly more surgery which terrifies me.

[Guest guest]

To be honest, i wouldn't wish this on my worst enemy. My fusion was from L-1 to

T-5.I had double curves ( " S " shaped with my spine twisted in the middle). The

progression started so rapidly that the top curve was pressing my heart and

lungs together and my doctor told me I had three to five years to live and would

be in a wheelchair before that if I did not have the surgery. I was 38 when I

discovered that I had soliosis and was in surgery within 4 months. It was the

most traumatic thing I had every been through. I worked for 4 more years until

my doctors deemed me disabled. My life was basically over due to the

complications of my surgery and so was my marriage. Add to that severe

depression and you have me today. Sedendary, not able to exercise or go out and

I still have that wheelchair in my future. I wish I could be more positive and

there are many people who think its the best thing they ever did. Everyone's

case is different. Mine was and still is very difficult to bear. I wish you the

best of luck.

>

> Hi Everyone,

>

> I'm new to this . I have had scholiois for most of my life . I am 43 now

and have decided to have surgery. My curves starts at my bra line and ends at my

tail bone. We are planning to do an 8 level fusion and I am looking for someone

who has had one or something similar. Or just here from others about their

surgery and how well and long it took them to recover. I should also mention

that my pain got worse which is why I decided on the surgery , walking ,

standing or sitting for longer then 30 min because almost unbearable .

> Thanks

>

[Guest guest]

I've had several surgeries in the last 5 years. I was doing well in the

beginning. I was in good shape, I had a lot of friends and family, and I made

sure I was very strong going into the " big " surgery. But after my rods broke and

I had a 2-part surgery, 2 years ago, I've gone downhill. First, the surgeon put

my iliac screw in my joint so I was in pain for the 18 months I had to wait to

get it removed. Now it's out but the pain remains. I'm 52 and I've built myself

back up so many times, gone through 5 wake ups in awful pain from the

surgeries, struggling to function despite ongoing pain...I'm depressed in a way

that makes me basically feel like I don't have the motivation I need to bring

myself back again. I need to strengthen all my muscles. I'm working on my

shoulder right now because I damaged it, just from daily living. I need to get

myself going but don't know how anymore. I feel so old! I've been in pain for 18

years now, with a one year repreive

after my surgery from T4-L5. I felt great until my rods broke. Now I can't feel

like me anymore. It sucks.

But for you, after only 4 months, you have a long way to go for recovery. After

my first 2 surgeries I started feeling " normal " after 1-2 years. It takes a long

time for that anesthesia and all the drugs to get out of your body. Give

yourself a break. Do little exercises. Try your hardest to keep your muscles

from atrophying. I think that's what happened to me, but because of that screw,

I couldn't do anything without it creating more pain. Good luck to us all.

________________________________

From: Deborah Meadors <dmeadors73@...>

Scoliosis Treatment

Sent: Fri, February 5, 2010 4:29:48 PM

Subject: Re: new to group

 

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

I am so sorry to hear you have had such a bad experience. Where do you have the

surgery?

I am 54 and with a serious S curve needing surgery but still feel I need to as I

am collapsing.

I am wondering if a different doctor can help you.

There is great support on this group and am sure you will get some good advice

as well.

Praying for you.

From: Deborah Meadors <dmeadors73@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Friday, February 5, 2010, 6:29 PM

 

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

If you had Harrington Rods from surgery in 2002 then you had a surgeon that

was not a scoliosis spine specialist. Reputable surgeons stopped using

that technique at least 10 years prior. It is imperative for scoliosis

patients to go to the right doctors.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Thank you so much. I had my surgery in Memphis, TN by Dr. Pratt.  I was

told he was the best in the area.

Deb

From: Deborah Meadors <dmeadors73 (DOT) com>

Subject: Re: new to group

Scoliosis Treatment

Date: Friday, February 5, 2010, 6:29 PM

 

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

Actually, I went back to work after 4 months, and was on deemed disabled after 4

years.  I had my surgery in 2002.  Everything you said sounds so familiar to

me. Between living in pain every day and dealing with depression, and not being

motivated to do anything because if you do, you're definitely going to pay for

it with pain.  Thanks.

From: Randie Meyer <taknitlite@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Friday, February 5, 2010, 10:43 PM

 

I've had several surgeries in the last 5 years. I was doing well in the

beginning. I was in good shape, I had a lot of friends and family, and I made

sure I was very strong going into the " big " surgery. But after my rods broke and

I had a 2-part surgery, 2 years ago, I've gone downhill. First, the surgeon put

my iliac screw in my joint so I was in pain for the 18 months I had to wait to

get it removed. Now it's out but the pain remains. I'm 52 and I've built myself

back up so many times, gone through 5 wake ups in awful pain from the

surgeries, struggling to function despite ongoing pain...I'm depressed in a way

that makes me basically feel like I don't have the motivation I need to bring

myself back again. I need to strengthen all my muscles. I'm working on my

shoulder right now because I damaged it, just from daily living. I need to get

myself going but don't know how anymore. I feel so old! I've been in pain for 18

years now, with a one year repreive

after my surgery from T4-L5. I felt great until my rods broke. Now I can't feel

like me anymore. It sucks.

But for you, after only 4 months, you have a long way to go for recovery. After

my first 2 surgeries I started feeling " normal " after 1-2 years. It takes a long

time for that anesthesia and all the drugs to get out of your body. Give

yourself a break. Do little exercises. Try your hardest to keep your muscles

from atrophying. I think that's what happened to me, but because of that screw,

I couldn't do anything without it creating more pain. Good luck to us all.

____________ _________ _________ __

From: Deborah Meadors <dmeadors73 (DOT) com>

Scoliosis Treatment

Sent: Fri, February 5, 2010 4:29:48 PM

Subject: Re: new to group

 

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

Thanks, I'll check on that.  I do know my doctor referred to them as harrington

rods.  I'm going in for yet another nerve block next week.  I will definitely

check it out.  Thanks again. I'm glad i found this forum .  It's not

something that you're average person can even comprehend.

From: S. Sogg <RSSSCOLIOSIS@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Friday, February 5, 2010, 5:27 PM

 

Deborah,

I am very sorry to hear about your situation, and do understand a great deal of

what you said. I had surgeries (2 six weeks apart due to loose hooks) in 1996

with Acromed Instrumentation (this is a generic version of Texas ish Rite

Hospital System Instrumentation) . I have been on disability since June 2008

(Social Security Disability Insurance (SSDI) and Federal Employee Disability

Retirement).

One point that you said I do want to comment about. I would be EXTREMELY

surprised if you have Harrington Rods (many incorrectly use " Harrington Rods " in

generic terms). In almost all cases Harrington Rods have not been used since

about 1984. Harrington Rods have been known to cause a condition called

" Flatback Syndrome " in patients who had spinal fusion surgeries in the 1960's,

1970's, and early 1980's. Harrington Rods did not take into account the natural

lordosis of the lower back. Hence, the term " Flatback Syndrome " .

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ********* **

In a message dated 02/05/10 19:48:31 Eastern Standard Time, dmeadors73 (DOT)

com writes:

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002. I've been told that children have much better results

from this surgery. Mine was an absolute nightmare. I had double curves ( " S " )

with a twist in the middle of my spine. within 4 months i was having surgery. It

was over an 8 hour surgery and I was in the hospital for 8 days. I have been on

pain management since. Anyone considering this surgery as an adult should do

extensive research. I don't want to scare anyone, but my experience has been

very bad. I was fused from T-1 to L-5 using harrington rods, screws, hooks,

crosslinks, etc. My Trev. muscle in the upper back has cause tremendous pain in

the form of muscle spasms. The Vertebre and disc L-5 to S-1 are my most recent

problems. I had to leave work in 2006 and go on permanent disability causing me

to lose everything including my marriage. Another problem with that comes with

this is severe depression. Please, get more than one opinion, use a surgeon who

specializes in the spine and pray. It has been a long and painful experience for

me. They already told me that a wheelchair was in my near future and possibly

more surgery which terrifies me.

[Guest guest]

Hi Deborah,

I am so very sorry to here what you have been going through. I can imagine how

hard it is to cope with the constant pain and the loss of your marriage. My

story is that I had surgery back in 1977 to correct my 50 degree " C " curve. I

was in pretty good shape for about 30 years when I started having constant pain

in my lower back and hip - where they took bone for the fusion. The leg on that

side gets numb and painful frequently as well. I started researching post

surgical issues for scoliosis patients and found two sites that deal with what

is called " flatback. " This is a syndrome that occurs when Harrington rods are

used to correct scoliosis.

Now, I don't know if you have flatback or not, but if you are fused to L5 with a

Harrington rod, then it is very likely you may have this syndrome. As I have

not reached the point where my pain is at a critical level, I have not moved

forward on a possible revision surgery - but you may want to look into this.

I am copying a couple links in this message to the other groups whose members

have flatback and have gone through revision surgery. They have an incredible

amount of experience and information that may help you find a surgeon that can

give you some relief from your pain and maybe give you some of your life back.

The groups are: and

. There are several surgeons in the

United States that deal with revision surgery for people who have had harrington

rods placed. Many of the members in these groups have struggled as you are and

found success with revision surgery. Of course, not everyone has a perfect

outcome. But doing your research, and these groups are a great place to start,

will help you find a qualified surgeon who may be able to help you.

I wish you well with your search and will keep you in my prayers.

Jeanne

Re: new to group

Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002. I've been told that children have much better results

from this surgery. Mine was an absolute nightmare. I had double curves ( " S " )

with a twist in the middle of my spine. within 4 months i was having surgery.

It was over an 8 hour surgery and I was in the hospital for 8 days. I have been

on pain management since. Anyone considering this surgery as an adult should do

extensive research. I don't want to scare anyone, but my experience has been

very bad. I was fused from T-1 to L-5 using harrington rods, screws, hooks,

crosslinks, etc. My Trev. muscle in the upper back has cause tremendous pain in

the form of muscle spasms. The Vertebre and disc L-5 to S-1 are my most recent

problems. I had to leave work in 2006 and go on permanent disability causing me

to lose everything including my marriage. Another problem with that comes with

this is severe depression. Please, get more than one opinion, use a surgeon

who specializes in the spine and pray. It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

[Guest guest]

At least with this group we can feel not as alone with our type of pain. Unless

you have it, it's hard to explain. And when people say they have back pain or

whatever, I say I wish I could say I have back pain. I had back pain when I was

young, when I shouldn't have had any pain. Now, it's beyond back pain. And it

just goes on and on and on. After so many years, I think it's hard to avoid

depression. I try doing some of the things I enjoy, like play the piano, walk my

dogs, write, read, sing...but I don't have the energy to keep up, and I can't

keep up because of my bad pain days, when I can't sit at the piano, or think

enough to write. It sounds like yours was way worse than mine. My curves were

55T and 45L.

________________________________

From: dmeadors73 <dmeadors73@...>

Scoliosis Treatment

Sent: Fri, February 5, 2010 7:01:02 PM

Subject: Re: new to group

 

To be honest, i wouldn't wish this on my worst enemy. My fusion was from L-1 to

T-5.I had double curves ( " S " shaped with my spine twisted in the middle). The

progression started so rapidly that the top curve was pressing my heart and

lungs together and my doctor told me I had three to five years to live and would

be in a wheelchair before that if I did not have the surgery. I was 38 when I

discovered that I had soliosis and was in surgery within 4 months. It was the

most traumatic thing I had every been through. I worked for 4 more years until

my doctors deemed me disabled. My life was basically over due to the

complications of my surgery and so was my marriage. Add to that severe

depression and you have me today. Sedendary, not able to exercise or go out and

I still have that wheelchair in my future. I wish I could be more positive and

there are many people who think its the best thing they ever did. Everyone's

case is different. Mine was and still is

very difficult to bear. I wish you the best of luck.

>

> Hi Everyone,

>

> I'm new to this . I have had scholiois for most of my life . I am 43 now and

have decided to have surgery. My curves starts at my bra line and ends at my

tail bone. We are planning to do an 8 level fusion and I am looking for someone

who has had one or something similar. Or just here from others about their

surgery and how well and long it took them to recover. I should also mention

that my pain got worse which is why I decided on the surgery , walking ,

standing or sitting for longer then 30 min because almost unbearable .

> Thanks

>

[Guest guest]

Hi Deborah,

I am sorry to hear about the poor outcome of your surgery.

I had a seven level fusion done in 2007 and it relieved my 30 years of back

pain. My spine was bent to a 55 degree curve and the pain was most intense in

the six months before I had my surgery. I was 60 at the time of my surgery. I

had it done on a Monday morning and left the hospital Friday afternoon to go to

my home. I refused rehab and my husband helped you heal.

The only problem I has was caused by a fall one month after the surgery. I fell

on both of my knees hard enough to loosen the hardware and them had to take me

back to surgery for a revision. After that they fitted me for a brace to wear

for 6 months while I was healing.

You are relatively young and I pray that you will find the right doctor to help

you with your pain.

Bev Oleksiak

Aurora, Ohio

>

> Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having surgery. 

It was over an 8 hour surgery and I was in the hospital for 8 days.  I have been

on pain management since.  Anyone considering this surgery as an adult should do

extensive research.  I don't want to scare anyone, but my experience has been

very bad.  I was fused from T-1 to L-5 using harrington rods, screws, hooks,

crosslinks, etc.  My Trev. muscle in the upper back has cause tremendous pain in

the form of muscle spasms.  The Vertebre and disc L-5 to S-1 are my most recent

problems.  I had to leave work in 2006 and go on permanent disability causing me

to lose everything including my marriage.  Another problem with that comes with

> this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

>

>

>

>

>

[Guest guest]

That's strange, he was a spine specialist, but i'm going to check it out Friday

when I go in to see him..Thanks, Deb

From: Buttonjo@... <Buttonjo@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Saturday, February 6, 2010, 10:19 AM

 

If you had Harrington Rods from surgery in 2002 then you had a surgeon that

was not a scoliosis spine specialist. Reputable surgeons stopped using

that technique at least 10 years prior. It is imperative for scoliosis

patients to go to the right doctors.

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

Deb:

There's a big difference between a spine specialist and a scoliosis spine

specialist. The treatment of scoliosis is highly specialized. A good indication

(although not 100%) is membership in the Scoliosis Research Society

(www.srs.org).

S.

********************************************************************************\

********************************************************************************\

**************************************************************

In a message dated 02/07/10 20:12:49 Eastern Standard Time, dmeadors73@...

writes:

That's strange, he was a spine specialist, but i'm going to check it out Friday

when I go in to see him..Thanks, Deb

From: Buttonjo@... <Buttonjo@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Saturday, February 6, 2010, 10:19 AM

If you had Harrington Rods from surgery in 2002 then you had a surgeon that

was not a scoliosis spine specialist. Reputable surgeons stopped using

that technique at least 10 years prior. It is imperative for scoliosis

patients to go to the right doctors.

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

Hi, It is my STRONG opinion that all scoli surgery patients must have a back

brace and a walker by the time they go home.

lj

From: BeverlyO <obev@...>

Subject: Re: new to group

Scoliosis Treatment

Date: Sunday, February 7, 2010, 4:15 PM

 

Hi Deborah,

I am sorry to hear about the poor outcome of your surgery.

I had a seven level fusion done in 2007 and it relieved my 30 years of back

pain. My spine was bent to a 55 degree curve and the pain was most intense in

the six months before I had my surgery. I was 60 at the time of my surgery. I

had it done on a Monday morning and left the hospital Friday afternoon to go to

my home. I refused rehab and my husband helped you heal.

The only problem I has was caused by a fall one month after the surgery. I fell

on both of my knees hard enough to loosen the hardware and them had to take me

back to surgery for a revision. After that they fitted me for a brace to wear

for 6 months while I was healing.

You are relatively young and I pray that you will find the right doctor to help

you with your pain.

Bev Oleksiak

Aurora, Ohio

>

> Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

> this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

>

>

>

>

>

[Guest guest]

Thanks I appreciate your support and your prayers. Please know that I live a

very poor quality of life. On here, people know what I'm going through and to

turely know someone understands mean a lot. Have a Blessed day.

>

>

> From: Deborah Meadors <dmeadors73@...>

> Subject: Re: new to group

> Scoliosis Treatment

> Date: Friday, February 5, 2010, 6:29 PM

>

>

>  

>

>

>

> Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

> this is severe depression.  Please, get more than one opinion, use a surgeon

who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

>

>

[Guest guest]

Agreed!!! I had a brace for 3 months and would not have minded wearing it longer

because the support felt great.... and I had a walker for 3 weeks. One has to

give the body time to heal.

> >

> > Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002.  I've been told that children have much better results

from this surgery.  Mine was an absolute nightmare.  I had double curves ( " S " )

with a twist in the middle of my spine.  within 4 months i was having

surgery.  It was over an 8 hour surgery and I was in the hospital for 8 days. 

I have been on pain management since.  Anyone considering this surgery as an

adult should do extensive research.  I don't want to scare anyone, but my

experience has been very bad.  I was fused from T-1 to L-5 using harrington

rods, screws, hooks, crosslinks, etc.  My Trev. muscle in the upper back has

cause tremendous pain in the form of muscle spasms.  The Vertebre and disc L-5

to S-1 are my most recent problems.  I had to leave work in 2006 and go on

permanent disability causing me to lose everything including my marriage. 

Another problem with that comes with

> > this is severe depression.  Please, get more than one opinion, use a

surgeon who specializes in the spine and pray.  It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

> >

> >

> >

> >

> >

[Guest guest]

I feel saying ALL scoliosis surgery patient must have a back brace and a walker

is exaggerating the point. I agree that ALL ADULT scoliosis patients must have a

back brace, and a walker; however, with the advances over the year it is often

not necessary for teenagers.

S.

********************************************************************************\

********************************************************************************\

************************************************************************

In a message dated 02/13/10 20:49:41 Eastern Standard Time, peribasel@...

writes:

Agreed!!! I had a brace for 3 months and would not have minded wearing it longer

because the support felt great.... and I had a walker for 3 weeks. One has to

give the body time to heal.

> >

> > Hi, i not only knew i had scoliosis but had never heard of it before i was

diagnosed at 38 in 2002. I've been told that children have much better

results from this surgery. Mine was an absolute nightmare. I had double

curves ( " S " ) with a twist in the middle of my spine. within 4 months i was

having surgery. It was over an 8 hour surgery and I was in the hospital for 8

days. I have been on pain management since. Anyone considering this

surgery as an adult should do extensive research. I don't want to scare

anyone, but my experience has been very bad. I was fused from T-1 to L-5

using harrington rods, screws, hooks, crosslinks, etc. My Trev. muscle in the

upper back has cause tremendous pain in the form of muscle spasms. The

Vertebre and disc L-5 to S-1 are my most recent problems. I had to leave

work in 2006 and go on permanent disability causing me to lose everything

including my marriage. Another problem with that comes with

> > this is severe depression. Please, get more than one opinion, use a

surgeon who specializes in the spine and pray. It has been a long and painful

experience for me. They already told me that a wheelchair was in my near future

and possibly more surgery which terrifies me.

> >

> >

> >

> >

> >

[Guest guest]

After my first fusion in 1996, I had neither and did just fine. I only had a

walker after my second fusion. Whether you have either probably depends on many

factors - your age, how many levels, Anterior, Posterior, A/P, your surgeon's

preference, etc.

>

> Hi, It is my STRONG opinion that all scoli surgery patients must have a back

brace and a walker by the time they go home.

> lj

[Guest guest]

Hi, Martha--welcome! It's great to hear homeopathy has helped your son. Good to have you on board here!

Winnie New To GroupVaccinations > Hi Everyone - I recently joined this group. I have two children > -- a 2 year old daughter and a 9 year old son. My son was dx'd > with autism at the age of 2 and we have been working with > classical homeopaths (using the 5th/6th edition) since he was 6 > years old. Homeopathy has helped him tremendously with his > chronic issues, namely ear infections, croup, bronchitis all of > which are illnesses of the past. > > We are also doing weekly acupunture sessions which also helps to > strengthen various organs -- liver, kidney, lungs, spleen. > > After seeing what happened to my son, I opted not to vax my > daughter and also to bypass the Vit K shot and antibiotics in > the eyes @ birth. We had a birth plan put in place but it was > quite a struggle to get the NJ hospital to agree with our > wishes. Ultimately, we got what we wanted for our daughter. My > daughter's immune system is amazing. She has been treated > homeopathically since birth. > > I would highly recommend working with a classical homeopath. > Look forward to learning from everyone in the Group.> > Regards,> Martha> >

[Guest guest]

Hi April,

I am new to the group too. I couldn't help replying to your email coz you described my son :-) . Its great to hear that your RDI consultant says this approach helps. We started it 2 weeks back .

My son makes progress with all interventions (we do RDI too) but his self stimulatory behaviors really stop him from doing a lot. I do think his sensory system is so overloaded that he is fighting to make sense out of his environment more than anything else.

Good luck and keep us posted.

Kavitha

CHILDRENWITHCHALLENGESGROUPS (DOT) COMFrom: april243@...Date: Fri, 5 Mar 2010 14:36:04 -0800Subject: New to group

Hi All,My name is April, I live in Oak Park, CA (Northern LA area) and I have two sons. My oldest is a NT 7 year old (Avery) and my youngest is an almost 5 year old with autism (Aydan). I found out about this group from the Musgatova Method website. Our RDI consultant recommended this technique to us. We have been working a RDI program for over a year and we began to notice that while my son was making some progress he continues to have constant self-stimulatory behavior that interferes with his ability to improve to his full potential. She recommended this method after several of her clients had tried it and were quite pleased with the results. If finances permit I will attend a class that's going to be held in Northern California; coming up in late May.Thanks for inviting me into your group. I look forward to corresponding with all of you and hearing your input.Warm Regards,Aprilhttp://aydansrecovery.blogspot.com/2009_08_01_archive.html

Hotmail: Powerful Free email with security by Microsoft. Get it now.

[Guest guest]

Welcome, a!

I was interested to read your story. Like you, I discovered accidentally

that I have a chiari malformation. Apparently mine is not a particular

cause for concern, though. I have long suspected that there is some

association between that type of abnormality and our scoliosis, since a

few of us seem to have both. It may be coincidental, but it does make me

wonder.

Like you, I also began to have pain and problems for the first time

after pregnancy.

It sounds as if you are doing the right thing to see a revision surgeon.

We hear very good things about Dr. Errico at this group. I believe some

of our members have had surgery with Dr. Dryer and have been happy with

him. Personally I can not recall hearing about Dr. Lonner before, but

that doesn't mean anything. We are always trying to find out who is is

good in revision surgery. We know our list is not complete.

We're glad to have you as a member.

Best,

-

-- In , " toblueeyez "

<toblueeyez@...> wrote:

>

> Hello Everyone,

> My name is a and I am new to the group and I have been reading up

on information before posting. I am 45 years old and I had my harrington

rod placed in my back in 1978 by Dr. Keim, NY at age 14. I have always

had issues with my back but not to a great extent that I couldn't get

around. My main issue was headaches and my neck and shoulders always

beeing tight. I contributed this to my back being fused and all of the

pressure going up to my neck. I struggled with my neck by seeing

chiropractors and acupunctures for years. I must say that acupuncture

helped with the headaches. But after I had my children, I started late

in life. My children are now 2 and 4 I started to have neurological

issues. I then had an MRI done to find out that I have chiari

malformation which really scared me finding out about this. I've been to

multiple doctors concerning this- some think that I need surgery for the

chiari ASAP while others say to wait until symptoms get worse. Anyway

then this lead me into thinking- maybe some of my issues could be from

my rod. I feel like the weight of my children pushed my whole spine down

and my legs are weak and weighted and I have numbness in my toes at

times. Anway, sorry this post is so long- I'm trying to condense what i

can. Anyway then I started to research information about the rod and I

came across some forums. I'm planning on going to go to a revision

surgeon to get his opinion on my rod and what it's doing to my body. I

live in NJ so I was hoping to start with a doctor close by. Since Dr.

Bouchie, doesn't take insurance, I was thinking of going to Dr. Lonner,

Dr. Errico or Dr. Dryer to start. I have heard more about dr. Errico and

Dryer than Dr. Lonner but I was wondering if this group feels that these

doctors are also well known revision surgeons. I think it was Diane that

just posted and mentioned a group of doctors that are revision

specialists but these doctors weren't on her list. I just want to get as

many opinions as possible.

> thank you

> erica

>

[Guest guest]

Hi and welcome to our group! I do believe that the closest surgeon I have

heard of near you that any members have consulted would be Dr Lloyd Hey in

Raleigh, NC. I believe some people have had some luck in Washington DC, but I

cannot remember any specific names at the moment. And yes, I believe I remember

hearing a name or two mentioned at Emory (is that in the Atlanta area?).

Hopefully somebody else can step in and help you out with more names!

If you do not have flatback, then have your doctors given you a name or

description of what IS the problem?

>

> Hi,

> My name is . I live in SC. I have had 3 fusion surgeries and two hardware

removal surgeries. My last one was the hardware removal in 08. I still have

trouble sitting for a long period and/or standing for a long period, thus making

a full time job impossible...

> This is a HUGE problem since I am trying to survive on my own without my

husband. HELP. Anyone with similar problems out there? I don't know anyone that

has had as much trouble as I have locally anyway. That is quite discouraging as

I begin to wonder if I am just a wimp. I seriously don't think so. The only

person I know who has had revision surgery locally had flatback due to the first

surgery as a teenager and had her revsion done by the guy at Emory(cant remember

his name at the moment). She got good correction and seems to do very well. My

fusion failed; my problem wasn't primarily flatback though there was some loss

of lordosis.

> But I am joining this group to find people who have had revision surgery. I

went to Dr. Denis at Twin Cities Spine Center, thought I had a good surgeon.

But after two revisions (fusion failed after first hardware removal) I don't

know if he was so great or not. But...what do you do? Do you just keep going

under the knife? Yikes, I don't think so. This is such a monumental surgery you

don't undergo it unless it is a last resort. So I am trying to make do in my

current condition. But working is killing me. I am working 20 hrs a week at a

job that pays very little. I sit primarily and I hurt after twenty hours. The

pain is cumulative...meaning the more I sit the more I hurt. I lie down on the

floor if it gets really bad, but there isn't much except reading that you can do

lying down...plus you look like a nut-case.

> I quit work to stay home with kids 18 years ago, so although I have a degree

in Industrial Engineering I have been out of the job market for so long that I

would almost be entry level if I tried to do that again, and who hires entry

level people on a part time basis? Nobody.

> Sooo, I am trying to find someone with pain like mine that has managed to work

and make a living. I am on disability but that is not enough to live on. I am

trying to get alimony but who knows whether that is going to work - I am at the

mercy of a judge.

> Thanks for any advice you might have.

>

>