New Member Intro

[Guest guest]

Welcome!

I suppose this would maybe be conversation better saved for another list, but

what was the water birth like? My daughter was born at home...and if God is

gracious and we conceive again, I am very interested in water birth. Would

you share?

Joan

[Guest guest]

Welcome I just wanted to tell you what a wonderful story!

I support your decisions and welcome you to learn more!

I am

Dawn

new member intro

> From: Anjin327@...

>

> Hi! I just joined the list after becoming pregnant with my second

> child...unexpectedly...17 years after my first child.

> 17 years ago I had my first daughter at a Birth Home with no drugs...was

home

> 3 hours later. I breast fed her until she was 2 and a half years and she

> slept with us for quite some time. All these things were considered rather

> radical at the time although not so much now. The only thing I regret

doing

> was vaccinating her. I did not know how many problems there were and did

not

> have access to any information about vaccines. I should have known though

> because my husband was given vaccines when he went to West Point and

swelled

> up and got very ill.

> We were fortunate that there were no serious problems when my daughter was

> vaccinated...though I would not have given her the vaccines if I had

known

> what I know now.

> One interesting thing did happen to us though ...When our first daughter

was

> under 2 years...we did not have much money so we took her to Public Health

to

> have her check ups. I was asked if I wanted to give her the new vaccine

that

> had just been approved...Chicken Pox. I hadn't heard about it and told

them I

> wanted to think about it first. I was told it was a very good thing to

give

> to her and safe. That week I read in the back part of the newspaper that a

> new vaccine was being TESTED on a group of children...Chicken Pox. Yes! It

> was being tested on poor children...and they were not even telling the

> parents that they were using their children as guinea pigs. Needless to

say I

> refused to give it to my daughter.

> I do not want to vaccinate my new baby and I am interested in

> alternatives...I have studied herbal medicine for myself and family and

have

> worked on keeping my immune system up in a variety of ways. By the

way...my

> new daughter was born at a Birth Center...no drugs and a four hour

> labor...and she was born under water. We plan to breast feed for a couple

> years if possible and she sleeps with us too...and she is a joy to be

around!

> Sorry about the long post...I use to be a professional storyteller...we

tend

> to get long winded :0).

> Anjin

>

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

> Looking for a new hobby? Want to make a new friend?

>

> Come join one of nearly 160,000 e-mail communities at ONElist!

[Guest guest]

Off the topic... on the water birth issue;

I too had a water birth at home and I must say it was

wonderful! The water was extremely relaxing and it

seemed to soften all the parts that need to stretch!

I labored in and out of this warm labor pool and when

it came time to push I wanted back in the water. Two

hours later my son emerged and floated right to the surface

for what seemed like the most gentle birthing experience.

I personally, cannot imagine giving birth on dry land.

One note... per my midwife... it is important to ensure

the baby comes right to the surface after being born. She

had another lady who had a water birth who was stuck on

keeping the baby submerged and the baby ended up aspirating

water and had complications... duh.

Anyway, if you want more details you can email me privately.

Sherri

Jefkarp@... wrote:

> From: Jefkarp@...

>

> Welcome!

> I suppose this would maybe be conversation better saved for another list, but

> what was the water birth like? My daughter was born at home...and if God is

> gracious and we conceive again, I am very interested in water birth. Would

> you share?

> Joan

>

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

> With more than 18 million e-mails exchanged daily...

>

> ...ONElist is THE place where the world talks!

[Guest guest]

Hi Sam,

Welcome to our group. Please go and read this article about Trudie

Lobban and her daughter's seizures. If it sounds like what your

daughter is experiencing, you can contact her from that web page.

Zoe

http://www.indiana.edu/~pietsch/ras.html

[Guest guest]

> Thanks for the link, however this is not my daughter " today " . When

she was 3wks up until the age of around 3 it fits her. At that time

she was diagnosed with pallid breath holding.

Hi Sam,

> Welcome to our group. Please go and read this article about

Trudie

> Lobban and her daughter's seizures. If it sounds like what your

> daughter is experiencing, you can contact her from that web page.

> Zoe

>

> http://www.indiana.edu/~pietsch/ras.html

[Guest guest]

Sam,

Reflex Anoxic Seizures are also called pallid breath holding

spells. Is your daughter under the care of a cardiologist? If she was

diagnosed with pallid breath holding spells was she not further

evaluated for the heart conditions that may cause them? Pallid

breath holding spells are not some kind of a tantrum or behavior

problem.

The seizures are real seizures, but it is not epilepsy when they are

being set off by a vagus nerve dysfunction as with RAS or a cardiac

disorder. I urge you again to contact Trudie Lobban from her web

site. She has a lot of knowledge in this area

(http://www.rasstars.org.uk/). These links will lead you to more

information. The second one is a report on Dr. Edell at the Mayo

clinic, a specialist in this area.

Zoe

Children's - Faxnotes - April 29, 1996

.... Pallid breath-holding spells, also known as reflex anoxic

seizures, most often ... Those

with a typical syncope, or typical episodes that are sufficiently

frequent ...

www.childrens.com/faxnotes/fx042996.htm - 8k - Cached - Similar pages

abc7news.com: Keeping Children Breathing

.... Dr. Dean Edell's House Calls. THE RESEARCH: Ten pediatric

patients with apparent

pallid breath-holding spells associated with bradycardia (critical

slowing of ...

http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

> > Thanks for the link, however this is not my daughter " today " .

When

> she was 3wks up until the age of around 3 it fits her. At that time

> she was diagnosed with pallid breath holding.

>

http://www.indiana.edu/~pietsch/ras.html

[Guest guest]

Hi Zoe,

Thanks for the links..She was diagnosed by a

cardiologist with pallid breath holding at 28 months.

I was told that she would most likely eventually

outgrow it, and she did. At that time she would just

be sitting in the floor playing or something and fall

over, not breathing...she was NEVER throwing a tantrum

when she did this. The situation we are facing today

is much different. The staring spells have always been

present and are getting worse, which her EEG last week

as i said was abnormal. She is seeing a neuro. on the

26th. Her ped. had me take her to see a psychiatrist

because she has also been hearing voices and

hallucinating...well this dr. thinks that she might

have schizoaffective disorder but wanted to wait til

she sees the neuro before starting any meds...(i

didn't want meds either at this time) said that he

wanted to get the seizures under control first and

have a MRI to make sure there was no tumor there that

was causing her hallucinations and such. Does anyone

on this list live in the Milwaukee Wis. area and

happen to know of dr. Zupont (s/p?) if so and you

have positive or negative experiences to share that

would be great.

--- zoe88025 <Zll51@...> wrote:

> Sam,

>

> Reflex Anoxic Seizures are also called pallid

> breath holding

> spells. Is your daughter under the care of a

> cardiologist? If she was

> diagnosed with pallid breath holding spells was she

> not further

> evaluated for the heart conditions that may cause

> them? Pallid

> breath holding spells are not some kind of a tantrum

> or behavior

> problem.

>

> The seizures are real seizures, but it is not

> epilepsy when they are

> being set off by a vagus nerve dysfunction as with

> RAS or a cardiac

> disorder. I urge you again to contact Trudie Lobban

> from her web

> site. She has a lot of knowledge in this area

> (http://www.rasstars.org.uk/). These links will

> lead you to more

> information. The second one is a report on Dr. Edell

> at the Mayo

> clinic, a specialist in this area.

>

> Zoe

>

> Children's - Faxnotes - April 29, 1996

> ... Pallid breath-holding spells, also known as

> reflex anoxic

> seizures, most often ... Those

> with a typical syncope, or typical episodes that are

> sufficiently

> frequent ...

> www.childrens.com/faxnotes/fx042996.htm - 8k -

> Cached - Similar pages

>

> abc7news.com: Keeping Children Breathing

> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

> pediatric

> patients with apparent

> pallid breath-holding spells associated with

> bradycardia (critical

> slowing of ...

>

http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

>

>

>

> > > Thanks for the link, however this is not my

> daughter " today " .

> When

> > she was 3wks up until the age of around 3 it fits

> her. At that time

> > she was diagnosed with pallid breath holding.

> >

> http://www.indiana.edu/~pietsch/ras.html

>

>

__________________________________________________

[Guest guest]

Hi Sam,

You must be worried sick yourself with all the uncertainty. Many of

the symptoms you describe are also fairly typical of seizures,

hallucinations, hearing sounds, bizarre behavior, etc. Does your ped

know much about audiogenic and olfactory seizures, common with

partial seizure disorders? And you already know the EEG is abnormal.

Even if she doesn't have a tumor, there are many things that might

account for her symptoms, like food and chemical sensitivities.

Antipsychotic drugs may lower the seizure threshold, which could then

worsen her seizures, not to mention other side effects. Did she also

have a thorough work up for allergies? These can play havoc with her

nervous system. You may find this group to be helpful in exploring

possibilities:

http://www.parentsofallergicchildren.org/

This link is to an article on brain allergies:

http://www.alternativementalhealth.com/articles/brainallergies.htm

It may be worth a shot to contact this lab and ask them what sort

of conditions should be checked out and excluded before assuming your

daughter has schizoaffective disorder.

Also, you can read Mark Schauss's account of his daughter's

experience with seizure on his web site. He is in this group and may

be another good resource for you. His daughter now has a normal EEG

if you saw his post.

http://www.carbonbased.com/EpilepsyJourney.htm

Zoe

-- In @y..., Vernetti <svernetti73@y...> wrote:

> Hi Zoe,

>

> Thanks for the links..She was diagnosed by a

> cardiologist with pallid breath holding at 28 months.

> I was told that she would most likely eventually

> outgrow it, and she did. At that time she would just

> be sitting in the floor playing or something and fall

> over, not breathing...she was NEVER throwing a tantrum

> when she did this. The situation we are facing today

> is much different. The staring spells have always been

> present and are getting worse, which her EEG last week

> as i said was abnormal. She is seeing a neuro. on the

> 26th. Her ped. had me take her to see a psychiatrist

> because she has also been hearing voices and

> hallucinating...well this dr. thinks that she might

> have schizoaffective disorder but wanted to wait til

> she sees the neuro before starting any meds...(i

> didn't want meds either at this time) said that he

> wanted to get the seizures under control first and

> have a MRI to make sure there was no tumor there that

> was causing her hallucinations and such. Does anyone

> on this list live in the Milwaukee Wis. area and

> happen to know of dr. Zupont (s/p?) if so and you

> have positive or negative experiences to share that

> would be great.

> --- zoe88025 <Zll51@h...> wrote:

[Guest guest]

Dear Sam,

I am certainly not the expert Zoe is and I'm so grateful for all of the helpful

information she send us. As I was reading what you wrote, though, a thought

struck me. Deficiencies in vitamin B-12 have been linked to schizophrenia and

to epilepsy. I struggle with a B-12 impairment constantly, and when my B-12 is

especially low, I find that I have emotional problems. Of course, heavy metals,

chemicals and aspirin can affect the body's stores of B-12. Has your precious

child had her B-12 levels checked?

Maybe this is irrelevant, but so many people (including me) have reported

improvement from adding B vitamins that I thought I'd mention it. Of course, it

is always best to use a B complex since the B vitamins work in concert with one

another.

I hope this is helpful to you.

Best wishes,

Carrol

Vernetti <svernetti73@...> wrote: Hi Zoe,

Thanks for the links..She was diagnosed by a

cardiologist with pallid breath holding at 28 months.

I was told that she would most likely eventually

outgrow it, and she did. At that time she would just

be sitting in the floor playing or something and fall

over, not breathing...she was NEVER throwing a tantrum

when she did this. The situation we are facing today

is much different. The staring spells have always been

present and are getting worse, which her EEG last week

as i said was abnormal. She is seeing a neuro. on the

26th. Her ped. had me take her to see a psychiatrist

because she has also been hearing voices and

hallucinating...well this dr. thinks that she might

have schizoaffective disorder but wanted to wait til

she sees the neuro before starting any meds...(i

didn't want meds either at this time) said that he

wanted to get the seizures under control first and

have a MRI to make sure there was no tumor there that

was causing her hallucinations and such. Does anyone

on this list live in the Milwaukee Wis. area and

happen to know of dr. Zupont (s/p?) if so and you

have positive or negative experiences to share that

would be great.

--- zoe88025 <Zll51@...> wrote:

> Sam,

>

> Reflex Anoxic Seizures are also called pallid

> breath holding

> spells. Is your daughter under the care of a

> cardiologist? If she was

> diagnosed with pallid breath holding spells was she

> not further

> evaluated for the heart conditions that may cause

> them? Pallid

> breath holding spells are not some kind of a tantrum

> or behavior

> problem.

>

> The seizures are real seizures, but it is not

> epilepsy when they are

> being set off by a vagus nerve dysfunction as with

> RAS or a cardiac

> disorder. I urge you again to contact Trudie Lobban

> from her web

> site. She has a lot of knowledge in this area

> (http://www.rasstars.org.uk/). These links will

> lead you to more

> information. The second one is a report on Dr. Edell

> at the Mayo

> clinic, a specialist in this area.

>

> Zoe

>

> Children's - Faxnotes - April 29, 1996

> ... Pallid breath-holding spells, also known as

> reflex anoxic

> seizures, most often ... Those

> with a typical syncope, or typical episodes that are

> sufficiently

> frequent ...

> www.childrens.com/faxnotes/fx042996.htm - 8k -

> Cached - Similar pages

>

> abc7news.com: Keeping Children Breathing

> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

> pediatric

> patients with apparent

> pallid breath-holding spells associated with

> bradycardia (critical

> slowing of ...

>

http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

>

>

>

> > > Thanks for the link, however this is not my

> daughter " today " .

> When

> > she was 3wks up until the age of around 3 it fits

> her. At that time

> > she was diagnosed with pallid breath holding.

> >

> http://www.indiana.edu/~pietsch/ras.html

>

>

__________________________________________________

[Guest guest]

Carol,

One side note on the B12 issue I have seen. People can test high for serum

B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular

Volume) and Methylmalonate, both excellent markers for functional B12

assessment. The important term here is functional assessment. If the body

is not utilizing the B12 properly and the functional measurements are off

then one needs to investigate other reasons, some of which you mention;

heavy metals, chemicals, aspirin (a horrible drug) and others. You are also

right on with the statement about needing other B vitamins to work

synergistically with each other.

In health,

Mark Schauss

www.carbonbased.com

Re: [ ] Re: New Member Intro

>

> Dear Sam,

> I am certainly not the expert Zoe is and I'm so grateful for all of the

helpful information she send us. As I was reading what you wrote, though, a

thought struck me. Deficiencies in vitamin B-12 have been linked to

schizophrenia and to epilepsy. I struggle with a B-12 impairment

constantly, and when my B-12 is especially low, I find that I have emotional

problems. Of course, heavy metals, chemicals and aspirin can affect the

body's stores of B-12. Has your precious child had her B-12 levels checked?

>

> Maybe this is irrelevant, but so many people (including me) have reported

improvement from adding B vitamins that I thought I'd mention it. Of

course, it is always best to use a B complex since the B vitamins work in

concert with one another.

>

> I hope this is helpful to you.

> Best wishes,

> Carrol

>

>

> Vernetti <svernetti73@...> wrote: Hi Zoe,

>

> Thanks for the links..She was diagnosed by a

> cardiologist with pallid breath holding at 28 months.

> I was told that she would most likely eventually

> outgrow it, and she did. At that time she would just

> be sitting in the floor playing or something and fall

> over, not breathing...she was NEVER throwing a tantrum

> when she did this. The situation we are facing today

> is much different. The staring spells have always been

> present and are getting worse, which her EEG last week

> as i said was abnormal. She is seeing a neuro. on the

> 26th. Her ped. had me take her to see a psychiatrist

> because she has also been hearing voices and

> hallucinating...well this dr. thinks that she might

> have schizoaffective disorder but wanted to wait til

> she sees the neuro before starting any meds...(i

> didn't want meds either at this time) said that he

> wanted to get the seizures under control first and

> have a MRI to make sure there was no tumor there that

> was causing her hallucinations and such. Does anyone

> on this list live in the Milwaukee Wis. area and

> happen to know of dr. Zupont (s/p?) if so and you

> have positive or negative experiences to share that

> would be great.

> --- zoe88025 <Zll51@...> wrote:

> > Sam,

> >

> > Reflex Anoxic Seizures are also called pallid

> > breath holding

> > spells. Is your daughter under the care of a

> > cardiologist? If she was

> > diagnosed with pallid breath holding spells was she

> > not further

> > evaluated for the heart conditions that may cause

> > them? Pallid

> > breath holding spells are not some kind of a tantrum

> > or behavior

> > problem.

> >

> > The seizures are real seizures, but it is not

> > epilepsy when they are

> > being set off by a vagus nerve dysfunction as with

> > RAS or a cardiac

> > disorder. I urge you again to contact Trudie Lobban

> > from her web

> > site. She has a lot of knowledge in this area

> > (http://www.rasstars.org.uk/). These links will

> > lead you to more

> > information. The second one is a report on Dr. Edell

> > at the Mayo

> > clinic, a specialist in this area.

> >

> > Zoe

> >

> > Children's - Faxnotes - April 29, 1996

> > ... Pallid breath-holding spells, also known as

> > reflex anoxic

> > seizures, most often ... Those

> > with a typical syncope, or typical episodes that are

> > sufficiently

> > frequent ...

> > www.childrens.com/faxnotes/fx042996.htm - 8k -

> > Cached - Similar pages

> >

> > abc7news.com: Keeping Children Breathing

> > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

> > pediatric

> > patients with apparent

> > pallid breath-holding spells associated with

> > bradycardia (critical

> > slowing of ...

> >

> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

> >

> >

> >

> > > > Thanks for the link, however this is not my

> > daughter " today " .

> > When

> > > she was 3wks up until the age of around 3 it fits

> > her. At that time

> > > she was diagnosed with pallid breath holding.

> > >

> > http://www.indiana.edu/~pietsch/ras.html

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

mark -- can you briefly describe the kind of testing you do?

: -subscribe

> > Group page:

> Group Archives: messages/

>

> You are receiving this email because you elected to subscribe to the

group on 's groups. By joining the list you agree to

hold

yourself FULLY responsible FOR yourself! Have a nice day !

>

>

[Guest guest]

Dear Mark,

I'm so glad you mentioned that! There may be many people out there who are

having tests which show their B-12 levels to be fine, when their bodies aren't

using the vitamins at all! The truth is that one doctor kept testing me for

B-12 deficiencies and found none, and he implied that my improvement with B

vitamins was all in my head. It was not until I saw another doctor who

conducted another test that my problem was discovered. (I wish I could remember

the name of the test!)

Have you ever thought about writing a book relating the information you've

discovered and the protocols you've utilized? I would sure like for my doctors

to sit down and talk with you for awhile!

Best wishes,

Carrol

Mark Schauss <schauss@...> wrote: Carol,

One side note on the B12 issue I have seen. People can test high for serum

B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular

Volume) and Methylmalonate, both excellent markers for functional B12

assessment. The important term here is functional assessment. If the body

is not utilizing the B12 properly and the functional measurements are off

then one needs to investigate other reasons, some of which you mention;

heavy metals, chemicals, aspirin (a horrible drug) and others. You are also

right on with the statement about needing other B vitamins to work

synergistically with each other.

In health,

Mark Schauss

www.carbonbased.com

Re: [ ] Re: New Member Intro

>

> Dear Sam,

> I am certainly not the expert Zoe is and I'm so grateful for all of the

helpful information she send us. As I was reading what you wrote, though, a

thought struck me. Deficiencies in vitamin B-12 have been linked to

schizophrenia and to epilepsy. I struggle with a B-12 impairment

constantly, and when my B-12 is especially low, I find that I have emotional

problems. Of course, heavy metals, chemicals and aspirin can affect the

body's stores of B-12. Has your precious child had her B-12 levels checked?

>

> Maybe this is irrelevant, but so many people (including me) have reported

improvement from adding B vitamins that I thought I'd mention it. Of

course, it is always best to use a B complex since the B vitamins work in

concert with one another.

>

> I hope this is helpful to you.

> Best wishes,

> Carrol

>

>

> Vernetti <svernetti73@...> wrote: Hi Zoe,

>

> Thanks for the links..She was diagnosed by a

> cardiologist with pallid breath holding at 28 months.

> I was told that she would most likely eventually

> outgrow it, and she did. At that time she would just

> be sitting in the floor playing or something and fall

> over, not breathing...she was NEVER throwing a tantrum

> when she did this. The situation we are facing today

> is much different. The staring spells have always been

> present and are getting worse, which her EEG last week

> as i said was abnormal. She is seeing a neuro. on the

> 26th. Her ped. had me take her to see a psychiatrist

> because she has also been hearing voices and

> hallucinating...well this dr. thinks that she might

> have schizoaffective disorder but wanted to wait til

> she sees the neuro before starting any meds...(i

> didn't want meds either at this time) said that he

> wanted to get the seizures under control first and

> have a MRI to make sure there was no tumor there that

> was causing her hallucinations and such. Does anyone

> on this list live in the Milwaukee Wis. area and

> happen to know of dr. Zupont (s/p?) if so and you

> have positive or negative experiences to share that

> would be great.

> --- zoe88025 <Zll51@...> wrote:

> > Sam,

> >

> > Reflex Anoxic Seizures are also called pallid

> > breath holding

> > spells. Is your daughter under the care of a

> > cardiologist? If she was

> > diagnosed with pallid breath holding spells was she

> > not further

> > evaluated for the heart conditions that may cause

> > them? Pallid

> > breath holding spells are not some kind of a tantrum

> > or behavior

> > problem.

> >

> > The seizures are real seizures, but it is not

> > epilepsy when they are

> > being set off by a vagus nerve dysfunction as with

> > RAS or a cardiac

> > disorder. I urge you again to contact Trudie Lobban

> > from her web

> > site. She has a lot of knowledge in this area

> > (http://www.rasstars.org.uk/). These links will

> > lead you to more

> > information. The second one is a report on Dr. Edell

> > at the Mayo

> > clinic, a specialist in this area.

> >

> > Zoe

> >

> > Children's - Faxnotes - April 29, 1996

> > ... Pallid breath-holding spells, also known as

> > reflex anoxic

> > seizures, most often ... Those

> > with a typical syncope, or typical episodes that are

> > sufficiently

> > frequent ...

> > www.childrens.com/faxnotes/fx042996.htm - 8k -

> > Cached - Similar pages

> >

> > abc7news.com: Keeping Children Breathing

> > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

> > pediatric

> > patients with apparent

> > pallid breath-holding spells associated with

> > bradycardia (critical

> > slowing of ...

> >

> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

> >

> >

> >

> > > > Thanks for the link, however this is not my

> > daughter " today " .

> > When

> > > she was 3wks up until the age of around 3 it fits

> > her. At that time

> > > she was diagnosed with pallid breath holding.

> > >

> > http://www.indiana.edu/~pietsch/ras.html

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Mark,

Your B12/folate comments caught my attention. My daughter's B12/folate

levels are excessively high (I recall the B12 was >2500 with 1100 as the

upper range). Serum levels have been tested twice and results were high both

times. When I queried the doctor about it - even asking if high levels might

inidicate a malabsorption or other metabolic problem that was preventing her

from utililzing the nutrients - he just said, " We only worry if the levels

are low. "

Her MCV has not been elevated. Perhaps we should test for methylmalonate -

is that a serum test and are there any other markers that might help

elucidate the problem?

Thanks so much,

Patti

On 6/26/02 1:10 PM, " Mark Schauss " <schauss@...> wrote:

> Carol,

>

> One side note on the B12 issue I have seen. People can test high for serum

> B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular

> Volume) and Methylmalonate, both excellent markers for functional B12

> assessment. The important term here is functional assessment. If the body

> is not utilizing the B12 properly and the functional measurements are off

> then one needs to investigate other reasons, some of which you mention;

> heavy metals, chemicals, aspirin (a horrible drug) and others. You are also

> right on with the statement about needing other B vitamins to work

> synergistically with each other.

>

> In health,

> Mark Schauss

> www.carbonbased.com

>

> Re: [ ] Re: New Member Intro

>

>

>>

>> Dear Sam,

>> I am certainly not the expert Zoe is and I'm so grateful for all of the

> helpful information she send us. As I was reading what you wrote, though, a

> thought struck me. Deficiencies in vitamin B-12 have been linked to

> schizophrenia and to epilepsy. I struggle with a B-12 impairment

> constantly, and when my B-12 is especially low, I find that I have emotional

> problems. Of course, heavy metals, chemicals and aspirin can affect the

> body's stores of B-12. Has your precious child had her B-12 levels checked?

>>

>> Maybe this is irrelevant, but so many people (including me) have reported

> improvement from adding B vitamins that I thought I'd mention it. Of

> course, it is always best to use a B complex since the B vitamins work in

> concert with one another.

>>

>> I hope this is helpful to you.

>> Best wishes,

>> Carrol

>>

>>

>> Vernetti <svernetti73@...> wrote: Hi Zoe,

>>

>> Thanks for the links..She was diagnosed by a

>> cardiologist with pallid breath holding at 28 months.

>> I was told that she would most likely eventually

>> outgrow it, and she did. At that time she would just

>> be sitting in the floor playing or something and fall

>> over, not breathing...she was NEVER throwing a tantrum

>> when she did this. The situation we are facing today

>> is much different. The staring spells have always been

>> present and are getting worse, which her EEG last week

>> as i said was abnormal. She is seeing a neuro. on the

>> 26th. Her ped. had me take her to see a psychiatrist

>> because she has also been hearing voices and

>> hallucinating...well this dr. thinks that she might

>> have schizoaffective disorder but wanted to wait til

>> she sees the neuro before starting any meds...(i

>> didn't want meds either at this time) said that he

>> wanted to get the seizures under control first and

>> have a MRI to make sure there was no tumor there that

>> was causing her hallucinations and such. Does anyone

>> on this list live in the Milwaukee Wis. area and

>> happen to know of dr. Zupont (s/p?) if so and you

>> have positive or negative experiences to share that

>> would be great.

>> --- zoe88025 <Zll51@...> wrote:

>>> Sam,

>>>

>>> Reflex Anoxic Seizures are also called pallid

>>> breath holding

>>> spells. Is your daughter under the care of a

>>> cardiologist? If she was

>>> diagnosed with pallid breath holding spells was she

>>> not further

>>> evaluated for the heart conditions that may cause

>>> them? Pallid

>>> breath holding spells are not some kind of a tantrum

>>> or behavior

>>> problem.

>>>

>>> The seizures are real seizures, but it is not

>>> epilepsy when they are

>>> being set off by a vagus nerve dysfunction as with

>>> RAS or a cardiac

>>> disorder. I urge you again to contact Trudie Lobban

>>> from her web

>>> site. She has a lot of knowledge in this area

>>> (http://www.rasstars.org.uk/). These links will

>>> lead you to more

>>> information. The second one is a report on Dr. Edell

>>> at the Mayo

>>> clinic, a specialist in this area.

>>>

>>> Zoe

>>>

>>> Children's - Faxnotes - April 29, 1996

>>> ... Pallid breath-holding spells, also known as

>>> reflex anoxic

>>> seizures, most often ... Those

>>> with a typical syncope, or typical episodes that are

>>> sufficiently

>>> frequent ...

>>> www.childrens.com/faxnotes/fx042996.htm - 8k -

>>> Cached - Similar pages

>>>

>>> abc7news.com: Keeping Children Breathing

>>> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

>>> pediatric

>>> patients with apparent

>>> pallid breath-holding spells associated with

>>> bradycardia (critical

>>> slowing of ...

>>>

>> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

>>>

>>>

>>>

>>>>> Thanks for the link, however this is not my

>>> daughter " today " .

>>> When

>>>> she was 3wks up until the age of around 3 it fits

>>> her. At that time

>>>> she was diagnosed with pallid breath holding.

>>>>

>>> http://www.indiana.edu/~pietsch/ras.html

>>>

>>>

>>

>>

>> __________________________________________________

>>

[Guest guest]

Patti,

Methymalonate is best tested as part of a urine organic acid test.

In health,

Mark Schauss

www.carbonbased.com

Re: [ ] Re: New Member Intro

> >

> >

> >>

> >> Dear Sam,

> >> I am certainly not the expert Zoe is and I'm so grateful for all of the

> > helpful information she send us. As I was reading what you wrote,

though, a

> > thought struck me. Deficiencies in vitamin B-12 have been linked to

> > schizophrenia and to epilepsy. I struggle with a B-12 impairment

> > constantly, and when my B-12 is especially low, I find that I have

emotional

> > problems. Of course, heavy metals, chemicals and aspirin can affect the

> > body's stores of B-12. Has your precious child had her B-12 levels

checked?

> >>

> >> Maybe this is irrelevant, but so many people (including me) have

reported

> > improvement from adding B vitamins that I thought I'd mention it. Of

> > course, it is always best to use a B complex since the B vitamins work

in

> > concert with one another.

> >>

> >> I hope this is helpful to you.

> >> Best wishes,

> >> Carrol

> >>

> >>

> >> Vernetti <svernetti73@...> wrote: Hi Zoe,

> >>

> >> Thanks for the links..She was diagnosed by a

> >> cardiologist with pallid breath holding at 28 months.

> >> I was told that she would most likely eventually

> >> outgrow it, and she did. At that time she would just

> >> be sitting in the floor playing or something and fall

> >> over, not breathing...she was NEVER throwing a tantrum

> >> when she did this. The situation we are facing today

> >> is much different. The staring spells have always been

> >> present and are getting worse, which her EEG last week

> >> as i said was abnormal. She is seeing a neuro. on the

> >> 26th. Her ped. had me take her to see a psychiatrist

> >> because she has also been hearing voices and

> >> hallucinating...well this dr. thinks that she might

> >> have schizoaffective disorder but wanted to wait til

> >> she sees the neuro before starting any meds...(i

> >> didn't want meds either at this time) said that he

> >> wanted to get the seizures under control first and

> >> have a MRI to make sure there was no tumor there that

> >> was causing her hallucinations and such. Does anyone

> >> on this list live in the Milwaukee Wis. area and

> >> happen to know of dr. Zupont (s/p?) if so and you

> >> have positive or negative experiences to share that

> >> would be great.

> >> --- zoe88025 <Zll51@...> wrote:

> >>> Sam,

> >>>

> >>> Reflex Anoxic Seizures are also called pallid

> >>> breath holding

> >>> spells. Is your daughter under the care of a

> >>> cardiologist? If she was

> >>> diagnosed with pallid breath holding spells was she

> >>> not further

> >>> evaluated for the heart conditions that may cause

> >>> them? Pallid

> >>> breath holding spells are not some kind of a tantrum

> >>> or behavior

> >>> problem.

> >>>

> >>> The seizures are real seizures, but it is not

> >>> epilepsy when they are

> >>> being set off by a vagus nerve dysfunction as with

> >>> RAS or a cardiac

> >>> disorder. I urge you again to contact Trudie Lobban

> >>> from her web

> >>> site. She has a lot of knowledge in this area

> >>> (http://www.rasstars.org.uk/). These links will

> >>> lead you to more

> >>> information. The second one is a report on Dr. Edell

> >>> at the Mayo

> >>> clinic, a specialist in this area.

> >>>

> >>> Zoe

> >>>

> >>> Children's - Faxnotes - April 29, 1996

> >>> ... Pallid breath-holding spells, also known as

> >>> reflex anoxic

> >>> seizures, most often ... Those

> >>> with a typical syncope, or typical episodes that are

> >>> sufficiently

> >>> frequent ...

> >>> www.childrens.com/faxnotes/fx042996.htm - 8k -

> >>> Cached - Similar pages

> >>>

> >>> abc7news.com: Keeping Children Breathing

> >>> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten

> >>> pediatric

> >>> patients with apparent

> >>> pallid breath-holding spells associated with

> >>> bradycardia (critical

> >>> slowing of ...

> >>>

> >> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html

> >>>

> >>>

> >>>

> >>>>> Thanks for the link, however this is not my

> >>> daughter " today " .

> >>> When

> >>>> she was 3wks up until the age of around 3 it fits

> >>> her. At that time

> >>>> she was diagnosed with pallid breath holding.

> >>>>

> >>> http://www.indiana.edu/~pietsch/ras.html

> >>>

> >>>

> >>

> >>

> >> __________________________________________________

> >>

[Guest guest]

I have been getting rib cage pain latley also when I

try to stretch my arms in the air.

The restless leg and shoulder syndrome too.

I also have high blood pressure (Cardizem 120 mg) and

high Colesterol (Lipitor 10 mg).

I just went for my 4th Remicade infusion yesterday.

For me this is a wonderful drug. I will not have the

liberty of ENBREL until later, but the Remicade works

well. I have had absolutly NO SIDE EFFECTS from

Remicade. I know everyone is different, but Remicade

works, and it works well.

Good Luck,

in Atlanta, GA

[Guest guest]

> I have been getting rib cage pain latley also when I

> try to stretch my arms in the air.

> The restless leg and shoulder syndrome too.

> I also have high blood pressure (Cardizem 120 mg) and

> high Colesterol (Lipitor 10 mg).

> I just went for my 4th Remicade infusion yesterday.

> For me this is a wonderful drug. I will not have the

> liberty of ENBREL until later, but the Remicade works

> well. I have had absolutly NO SIDE EFFECTS from

> Remicade. I know everyone is different, but Remicade

> works, and it works well.

> Good Luck,

> in Atlanta, GA

, thanks to yours and Meghan's comments, along with other

resources I've been reading, I have gotten up the courage to call my

Dr. and try to get insurance approval for Remicade. Any relief at

this point is welcome. Thanks again for the encouragement.

B

[Guest guest]

I think you have seen the bounce back effect of coming off prednisone. A

lot of authorities warn that prednisone is bad for psoriasis sufferers.

When you come off the P can get quite bad as you have found - they even

describe a pustulating dermatitis that is possible after corticosteroid

use.

I was on MTX and vitamin 'P' (prednisone) but without a diagnosis and

showing no P. When my rheumie weaned me off both drugs, I broke out all

over with every type of P somewhere on my body. A positive diagnosis of PA

quickly ensued.

I think the red spots are called gutturate psoriasis. Sometimes they will

join up and form scales. Sometimes they go away. Sometimes they stay and

just itch like mad!!

I was at 40% body coverage with weeping skin in many places during the

post-prednisone break-out. I am now at 5%-10% coverage with some gutturate

and some scaly P and occasionally a little of the inverse P re-appears in

folds. I am not clear again but it did get much better after I got back on

MTX.

Good luck and keep off the vitamin 'P'.

On Thursday, September 19, 2002, at 01:59 AM, robertbresson2001 wrote:

> Hi group,

>

> I have been lurking for a few months now, and

> thought it was about time to introduce myself.

>

> I am a 43 year old male. My P started at

> about age 24, and has gradually increased

> to more areas, now including scalp, ears,

> and groin. I also have characteristic

> nail problems (onycholysis). A couple of

> years ago, my jaw started acting up in

> terms of both pain and restricted range of

> motion. After visiting a dentist and an

> internist, an oral surgeon refered me to

> a rheumatologist, who diagnosed PA on the

> basis of x-rays showing sacroiliitis.

> I also have pain/swelling in my right 5th

> finger DIP joint, and 4th and 5th left toes,

> plus some neck pain and mild rib cage pain.

>

> My rheumy started me on Naprosyn, but I

> couldn't tolerate the stomach pain, so we

> switched me to 200 mg Celebrex. That plus

> a bite splint for my jaw have been reasonably

> helpful over the past few months.

>

> One thing in particular has surprised me. My

> Rheumy claims that my jaw and finger problems

> are actually osteoarthritis, not the PA, based

> on a lack of erosion in the x-rays. This seems

> weird to me -- any thoughts from you guys?

>

> The latest " crisis " which got me to write is

> that I was weeding in my yard recently, and got

> a bad case of poison ivy. I scratched it more

> than I should have, and managed to get a nasty

> infection. My arms were swelled way up and oozing

> all kinds of nasty stuff. I went to my doctor's

> office and they sent me straight to the ER, where

> I was given antibiotics, and also a shot of Prednisone

> and an RX for oral Prednisone, 3 days of 60 mg

> followed by 3 days of 40 mg, followed by 3 days of

> 20 mg. My arms healed up nicely, and my P and joint

> pains vanished while on Prednisone. I also was free

> of the chronic FATIGUE I forgot to mention earlier.

>

> However, a day or two after my last dose of Prednisone,

> I started breaking out in red P spots all over my body.

> My chest and face are the hardest hit, but I am literally

> covered with red spots. Now I'm wondering if my P is

> going to be permanently much worse, or if there is anything

> I can do to get back to normal. Any advice would be much

> appreciated.

>

> Thanks and best wishes to all,

>

> -Bob

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began

> to conduct extensive research which he publishes as the Psoriatic

> Arthritic Research Newsletter monthly in our emails and digest format.

> Many thanks to Jack. Back issues of the newsletter are stored on our PA

> webpage.

>

> Also remember that the list archives comprise a tremendous amount of

> information (Over two years of messages and answers).Feel free to browse

> them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

> question chances are there is a person who has been around a while who

> can help you out with an educated guess for an answer. If not we can at

> least steer you in the right direction with a good website to go to for

> the answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

Just a quick update. What I thought was a

major P flare-up the doctor said was actually

an allergic reaction to the antibiotic

(cephalexin) that I was taking. Benadryl seems

to be bringing it under control. How ironic to

be thrilled to have an allergic reaction, but I

am very relieved...

> Hi group,

>

> I have been lurking for a few months now, and

> thought it was about time to introduce myself.

>

> I am a 43 year old male. My P started at

> about age 24, and has gradually increased

> to more areas, now including scalp, ears,

> and groin. I also have characteristic

> nail problems (onycholysis). A couple of

> years ago, my jaw started acting up in

> terms of both pain and restricted range of

> motion. After visiting a dentist and an

> internist, an oral surgeon refered me to

> a rheumatologist, who diagnosed PA on the

> basis of x-rays showing sacroiliitis.

> I also have pain/swelling in my right 5th

> finger DIP joint, and 4th and 5th left toes,

> plus some neck pain and mild rib cage pain.

>

> My rheumy started me on Naprosyn, but I

> couldn't tolerate the stomach pain, so we

> switched me to 200 mg Celebrex. That plus

> a bite splint for my jaw have been reasonably

> helpful over the past few months.

>

> One thing in particular has surprised me. My

> Rheumy claims that my jaw and finger problems

> are actually osteoarthritis, not the PA, based

> on a lack of erosion in the x-rays. This seems

> weird to me -- any thoughts from you guys?

>

> The latest " crisis " which got me to write is

> that I was weeding in my yard recently, and got

> a bad case of poison ivy. I scratched it more

> than I should have, and managed to get a nasty

> infection. My arms were swelled way up and oozing

> all kinds of nasty stuff. I went to my doctor's

> office and they sent me straight to the ER, where

> I was given antibiotics, and also a shot of Prednisone

> and an RX for oral Prednisone, 3 days of 60 mg

> followed by 3 days of 40 mg, followed by 3 days of

> 20 mg. My arms healed up nicely, and my P and joint

> pains vanished while on Prednisone. I also was free

> of the chronic FATIGUE I forgot to mention earlier.

>

> However, a day or two after my last dose of Prednisone,

> I started breaking out in red P spots all over my body.

> My chest and face are the hardest hit, but I am literally

> covered with red spots. Now I'm wondering if my P is

> going to be permanently much worse, or if there is anything

> I can do to get back to normal. Any advice would be much

> appreciated.

>

> Thanks and best wishes to all,

>

> -Bob

[Guest guest]

Welcome, Jim.

I'm glad you found us, though sorry to learn of your pains. We are a pretty big

group!

We do have a number of Canadian members, so hopefully someone can steer you

toward a qualified flatback specialist.

Regarding the work issue, you may be able to get back into it more quickly than

you think after revision surgery, especially if your employer is flexible.

Techniques and expectations of major spine surgery are vastly different from

what they were in the 60's and 70's. This is not to trivialize the impact of

major spine surgery, but they do get you up and walking right away.

Best of luck in your search for relief, and I hope we can be a good resource and

support for you.

Sharon

new member intro

Hi, All

My name is Jim Lane. I'm 53 years old and live in Toronto. I had my

Harrington in 1966 also here in Toronto. I was more or less OK until

1994 when I had a sudden atack of acute back pain. These acute

episodes has continued every couple of years or so. Other than that I

have chronic pain that's been getting worse very, very slowly over the

years.

From the descriptions I've read on the web I think I have flat back

syndrome but not an especially bad case of it. I walk around a bit

like Groucho Marx, hunched forward a bit. I also have chronic pain in

my hips and knees which I've been dealing with on the theory that it's

osteoarthritis, Devil's Claw seems to work better that Vioxx.

Otherwise it's painkillers for the back pain.

I've had consults with 2 local orthopaedists, one in 1995 and again in

2000. Apparently my rod is broken but neither of these guys seemed to

think that was much of a problem. Their advice basically was " put up

with it for as long as you possibly can " but without much on what, if

anything, could or chould be done when I can't take it amy longer. I'm

not at all eager to contemplate surgery because I'm afraid that after

a lengthy recovery time I may never work again (computer jobs are

getting harder to come by these days).

Anyway, that's about all I've got to say for myself to start with. I'm

looking forward to finding a peer group here because it's kind of

lonely not knowing anybody else in the same fix I'm in.

Regards,

Jim Lane

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Welcome fellow Canadian Jim,

Even though I live on the West Coast, I know that there is a Scoliosis

Association chapter in Ontario. n, the chapter president, had surgery

with Dr. Ford and was very pleased with her treatment. You can either go to

www.scoliosis-assoc.org for her information or you can e-mail me personally

and I can send you the information. Chronic pain is definitely no fun and

waiting to get some sort of treatment is just about as much pain. I'm on the

wait list for Vancouver Spine Clinic and things are getting worse. I had my

surgery in Toronto in 1973, but I lived in Saskatchewan at the time. Keep

tuned to this group as I have learned a lot since I joined and have made

some good friends, who understand what we are going through and not just

empathies.

Llweyn

new member intro

Hi, All

My name is Jim Lane. I'm 53 years old and live in Toronto. I had my

Harrington in 1966 also here in Toronto. I was more or less OK until

1994 when I had a sudden atack of acute back pain. These acute

episodes has continued every couple of years or so. Other than that I

have chronic pain that's been getting worse very, very slowly over the

years.

From the descriptions I've read on the web I think I have flat back

syndrome but not an especially bad case of it. I walk around a bit

like Groucho Marx, hunched forward a bit. I also have chronic pain in

my hips and knees which I've been dealing with on the theory that it's

osteoarthritis, Devil's Claw seems to work better that Vioxx.

Otherwise it's painkillers for the back pain.

I've had consults with 2 local orthopaedists, one in 1995 and again in

2000. Apparently my rod is broken but neither of these guys seemed to

think that was much of a problem. Their advice basically was " put up

with it for as long as you possibly can " but without much on what, if

anything, could or chould be done when I can't take it amy longer. I'm

not at all eager to contemplate surgery because I'm afraid that after

a lengthy recovery time I may never work again (computer jobs are

getting harder to come by these days).

Anyway, that's about all I've got to say for myself to start with. I'm

looking forward to finding a peer group here because it's kind of

lonely not knowing anybody else in the same fix I'm in.

Regards,

Jim Lane

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Hi Jim

My name is Simone and I live in Spain (born UK, operated on UK), I am 27,

operation at 11.

I too had a harrington rod in March 1989, like yourself I was well and felt

good, carried on with life like nothing had happened. I have always been an

active person, until now!

I too started with lower back pains from the area where they removed bone graft

and this has got worse and worse over the years, the area around the scar is

very painful to touch, I had day release for local anaesthetic and steroids in

1998 and that seemed to work for 6 months and then the pains started again.

I do sometimes find that when I get up off the sofa I too am bent over until

after a few seconds and then I manage to straighten, pain is a very difficult

thing to describe and I find it even harder to explain it to a Doctor.

My GP in the UK said that the pain I have down my right leg is my sciatic nerve

and offered me the chance to have it numbed so I would never feel the pain

again, however there are some bad side effects (loosing the feeling in the

bottom!), so as you can imagine I said no to that procedure, or I could have the

Steroid and anaesthetic injections on a regular basis, but again not a pleasant

experience as this causes high weight gain which I then find difficult to shed

because I am not able to do much exercise because of the pain.

I have Reflexology for the time being while I am searching for a way to make

life easier, I do appreciate a cure may not be found but a more comfortable

wouldnt go a miss! Maybe Reflexology can help for you too?

I am sorry I do not have other options or help but I wanted you to know that you

are not alone, if you can swim on a regular basis this may also help, I find I

am painless in the water, being weightless I guess is the reason for this, and

swimming is of course a very good way to keep fit and keep the muscles going.

I have other pains at the top where my rod is now poking out at the top but I do

believe you can have this trimmed down but that is for another time.

I do wish you well and hope you can find a solution, I will be interested to

hear anything you manage to research.

Take Care and Best Wishes

Simone

new member intro

Hi, All

My name is Jim Lane. I'm 53 years old and live in Toronto. I had my

Harrington in 1966 also here in Toronto. I was more or less OK until

1994 when I had a sudden atack of acute back pain. These acute

episodes has continued every couple of years or so. Other than that I

have chronic pain that's been getting worse very, very slowly over the

years.

From the descriptions I've read on the web I think I have flat back

syndrome but not an especially bad case of it. I walk around a bit

like Groucho Marx, hunched forward a bit. I also have chronic pain in

my hips and knees which I've been dealing with on the theory that it's

osteoarthritis, Devil's Claw seems to work better that Vioxx.

Otherwise it's painkillers for the back pain.

I've had consults with 2 local orthopaedists, one in 1995 and again in

2000. Apparently my rod is broken but neither of these guys seemed to

think that was much of a problem. Their advice basically was " put up

with it for as long as you possibly can " but without much on what, if

anything, could or chould be done when I can't take it amy longer. I'm

not at all eager to contemplate surgery because I'm afraid that after

a lengthy recovery time I may never work again (computer jobs are

getting harder to come by these days).

Anyway, that's about all I've got to say for myself to start with. I'm

looking forward to finding a peer group here because it's kind of

lonely not knowing anybody else in the same fix I'm in.

Regards,

Jim Lane

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

--WELCOME Jim,

I to am a canadian, right inbetween you and Llywen, Winnipeg.

So sorry to hear that you are in chronic pain all the time. I had

my surgery in 1976 here in winnipeg. Now I to have a broken rod.

We do not know how long it has been that way, at least 4 years. But

know it is causing me pain and numbness. I am waiting to get into a

spine specialist here in wpg.

This group has been great for me and just a wealth of information.

I know that they can be that for you also.

Debbie

- In , " jimlane66 "

<jimlane@s...> wrote:

> Hi, All

>

> My name is Jim Lane. I'm 53 years old and live in Toronto. I had my

> Harrington in 1966 also here in Toronto. I was more or less OK

until

> 1994 when I had a sudden atack of acute back pain. These acute

> episodes has continued every couple of years or so. Other than

that I

> have chronic pain that's been getting worse very, very slowly over

the

> years.

> From the descriptions I've read on the web I think I have flat back

> syndrome but not an especially bad case of it. I walk around a bit

> like Groucho Marx, hunched forward a bit. I also have chronic pain

in

> my hips and knees which I've been dealing with on the theory that

it's

> osteoarthritis, Devil's Claw seems to work better that Vioxx.

> Otherwise it's painkillers for the back pain.

> I've had consults with 2 local orthopaedists, one in 1995 and

again in

> 2000. Apparently my rod is broken but neither of these guys seemed

to

> think that was much of a problem. Their advice basically was " put

up

> with it for as long as you possibly can " but without much on what,

if

> anything, could or chould be done when I can't take it amy longer.

I'm

> not at all eager to contemplate surgery because I'm afraid that

after

> a lengthy recovery time I may never work again (computer jobs are

> getting harder to come by these days).

> Anyway, that's about all I've got to say for myself to start with.

I'm

> looking forward to finding a peer group here because it's kind of

> lonely not knowing anybody else in the same fix I'm in.

>

> Regards,

> Jim Lane

[Guest guest]

Hi, Sharon

I used to have a flexible employer until they laid me off last year.

Since then I've been bumping around with temporary and contract jobs.

The computer business isn't the bed of roses it used to be. I'm still

hoping to be able to retire in a few years.

My back problems aren't as bad as some I've been reading about here or

maybe it's just that I've gotten used to it over the years. " Insidious

onset " will do that to you. I've made my peace with the fact that

there are a lot of things I can't do so maybe a restricted routine has

helped. I'm hoping to get more information about the revision surgery

options from this group so that I'll be in a better position to

evaluate my options if it ever gets to that point.

Regards,

Jim Lane

> Welcome, Jim.

>

> I'm glad you found us, though sorry to learn of your pains. We are

a pretty big group!

>

> We do have a number of Canadian members, so hopefully someone can

steer you toward a qualified flatback specialist.

>

> Regarding the work issue, you may be able to get back into it more

quickly than you think after revision surgery, especially if your

employer is flexible. Techniques and expectations of major spine

surgery are vastly different from what they were in the 60's and 70's.

This is not to trivialize the impact of major spine surgery, but they

do get you up and walking right away.

>

> Best of luck in your search for relief, and I hope we can be a good

resource and support for you.

>

> Sharon

>

>

> new member intro

>

>

> Hi, All

>

> My name is Jim Lane. I'm 53 years old and live in Toronto. I had my

> Harrington in 1966 also here in Toronto. I was more or less OK until

> 1994 when I had a sudden atack of acute back pain. These acute

> episodes has continued every couple of years or so. Other than that I

> have chronic pain that's been getting worse very, very slowly over the

> years.

> From the descriptions I've read on the web I think I have flat back

> syndrome but not an especially bad case of it. I walk around a bit

> like Groucho Marx, hunched forward a bit. I also have chronic pain in

> my hips and knees which I've been dealing with on the theory that it's

> osteoarthritis, Devil's Claw seems to work better that Vioxx.

> Otherwise it's painkillers for the back pain.

> I've had consults with 2 local orthopaedists, one in 1995 and again in

> 2000. Apparently my rod is broken but neither of these guys seemed to

> think that was much of a problem. Their advice basically was " put up

> with it for as long as you possibly can " but without much on what, if

> anything, could or chould be done when I can't take it amy longer. I'm

> not at all eager to contemplate surgery because I'm afraid that after

> a lengthy recovery time I may never work again (computer jobs are

> getting harder to come by these days).

> Anyway, that's about all I've got to say for myself to start with. I'm

> looking forward to finding a peer group here because it's kind of

> lonely not knowing anybody else in the same fix I'm in.

>

> Regards,

> Jim Lane

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

>

>

[Guest guest]

Dear Cath,

Welcome to the group! I too am 45, had my Harrington Rod surgery in 1973 at UCSF

in San Francisco, Ca. I know what you mean about getting records from hospitals

from all those years ago. I had Zero luck! My parents who were my parents

at the time of my surgery couldn't remember the degrees of my curves, and I

don't think I was ever told. We couldn't even remember the name of the surgeon

who did the surgery, only our ortho doc who refered us to him, and of course he

was dead. I now keep binders with all my medical stuff, surgical reports,

insurance, etc. I also get copies of X-rays when possible. I now know that it's

my job to keep all that stuff together, and since we've moved a lot, and have

seen a lot of doctors it's important to keep that stuff in one place. You learn

as you go!

I hope that you find a great doctor to help you through your Flatback journey!

Colorado Springs

New member intro

Hello,

My name is Cath and I am 45 years old. I had a spinal fusion at the

Rolyal National Orthopaedic Hospital, Stanmore, London in 1971 when

I was 12. I have congenital scoliosis in my neck and lumbar regions.

I had halo pelvic traction and have a Harrington rod for the lumbar

fusion.I was in hospital for a ,long time and it was very traumatic.

I find it really hard to go back to hospital now. My fusion was

successful and I went on to lead a relatively normal life for about

20 years but then things started to deteriorate and over the last 10

years I have gone from being able to get about and being fairly

active to needing one stick, then 2 then a wheelchair. I have a lot

of pain and my body is so tired. I have seen many doctors and have

been told I have Flatback Syndrome. I run my own company and used to

work out and about but now I run my business from home as I just

can't physically manage.I have an unbelieveably supportive husband &

son and Access to Work has made it possible for me to carry on

working full time from home - I have a lap top and stair lifts (I

live in a 3 story house!)and the computers in the house have been

networked so that I can work from the office, a chair or bed -

whichever is needed at a particular time. I know you all know that

there are so many issues related to this subject - it's not only

physical but emotional. It's all fairly new to me and I have spent

some time trying to find others who know what I am feeling so I'm so

glad to find this group.I don't feel informed about my condition

because no one explained to me what was happening to me when I was

young - my parents are loving and caring but couldn't cope with

discussing it so it's only as I have got older and things have

started to go wrong that I have been trying to piece together my

medical history and related problems. I only recently discovered I

have one kidney, which I believe is common in congenital scoliosis.

I also have a thyroid problem and various other issues that I am

starting to realise are all conected. I feel so ignorant and there

aren't many people I can ask. The hospital couldn't find my records

as they have been archived and they said they couldn't get them. My

GP notes are very basic. I have no idea what my degre of curvature

was or details of my operation - I am amazed at the depth of

knowledge other people seem to have about their condition. Well,

that's the tip of my iceberg! Look forward to chatting and 'meeting'

you all. Bye for now, Cath

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Hi Cath and welcome to the group. I am 49 and had 35

'good' years after my scoliosis fusion with Harrington

Rod. Mine was T6 to L3 and now I have a slipping spine

at L5-S1 and having another fusion for that in

November. My original medical records were gone but

the surgeons I saw for opinions this year measured my

current curvature and sagittal imbalance from the

x-rays taken. I also had a CT scan and MRI. None of

them seemed concerned that I did not have the

information from 1969. Anyway, I hope you have found a

caring doctor to work with you. There are a lot of

websites you can get information from like

spineuniverse.com. And the folks in this group are

wonderful and knowledgeable so you've come to the

right place. - Kathi in NJ

--- cathw59 <cathw59@...> wrote:

>I have seen many doctors and have

> been told I have Flatback Syndrome.

__________________________________________________