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Blessed be me! It's Teri! Some of these old timers need you here girl. You're

a great person to have aboard. Wish you didn't need to, of course, but,your

presence is a blessing!

>Hi,

> My name is Teri. I have been a member of this group before. I am so

> happy to feel well enough to join again. I will try and tell a very

condensed

version of my story. At 33 I found

> out that I had a birth defect. Tethered Cord, Spinal lipoma and Spina

> Bifida Occulta. For some unknown reason the tumor decided to grow at

> that time. I was married with 3 boys then. I had surgery which while

neccessary,

caused a condition called

> arachnoiditis. As with most of you I went through various pain controll

> modalities. I ended up and am still on significant meds as well as

> having a spinal cord stimulator. During all this my marraige failed. To

much for my ex-husband. To him I

> became I liability. This as bad as it was , became the best thing that

> could have happened to me. I met my new husband. He never new me

pre-disability.

Accepts me just

> as I am. I wound up having a baby girl.......... who I thought I could

> or would never have. Somehow my life is working out with the pain. I am

now more aware and much more greatful.

> So that is it in a nutshell.

> To all the ol'time members HHHiiiiii~ , Laurie, Kathy. I miss

> you guys. Feel Well,

> Teri

>

>

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

kathy@...,michelle@...,

rick@...

>

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I don't mean to put you on the spot but how was your diagnoses for

arachnoitoidis made? Are you sure it is arach or is it retetehering?

> Hi,

> My name is Teri. I have been a member of this group before. I am

so

> happy to feel well enough to join again. I will try and tell a

very condensed version of my story. At 33 I found

> out that I had a birth defect. Tethered Cord, Spinal lipoma and

Spina

> Bifida Occulta. For some unknown reason the tumor decided to

grow at

> that time. I was married with 3 boys then. I had surgery

which while neccessary, caused a condition called

> arachnoiditis. As with most of you I went through various pain

controll

> modalities. I ended up and am still on significant meds as well

as

> having a spinal cord stimulator. During all this my marraige

failed. To much for my ex-husband. To him I

> became I liability. This as bad as it was , became the best

thing that

> could have happened to me. I met my new husband. He never new

me pre-disability. Accepts me just

> as I am. I wound up having a baby girl.......... who I thought

I could

> or would never have. Somehow my life is working out with the

pain. I am now more aware and much more greatful.

> So that is it in a nutshell.

> To all the ol'time members HHHiiiiii~ , Laurie, Kathy.

I miss

> you guys. Feel

Well,

> Teri

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Share on other sites

> Hi,

I don't mind being put on the spot. That is the great thing about this

group. The exchange of informations, thoughts and ideas. I have infact

retethered. That was confirmed about 8 mos after my initial surgery.

But, it retethered in a place thought to not be causing these

problems. I had a second opinion by a Doctor who was recommeded by this

group. A

doctor Epstein. He was thought to be the best in this area. He reviewed

all my MRI's CT scans , oral history ect. The determination was

Arachnoiditis to which my Neurosurgeon agreed. I remember thinking at the

time......... that things were going on

with me that did not seem common in this group. There are great

Arachnoiditis web sites as well. Although I have never

found another that is as friendly and comforting as this group.

Feel Well,

Teri

>

> I don't mean to put you on the spot but how was your diagnoses for

> arachnoitoidis made? Are you sure it is arach or is it retetehering?

>

>

>> Hi,

>> My name is Teri. I have been a member of this group before. I am

> so

>> happy to feel well enough to join again. I will try and tell a

> very condensed version of my story. At 33 I found

>> out that I had a birth defect. Tethered Cord, Spinal lipoma and

> Spina

>> Bifida Occulta. For some unknown reason the tumor decided to

> grow at

>> that time. I was married with 3 boys then. I had surgery

> which while neccessary, caused a condition called

>> arachnoiditis. As with most of you I went through various pain

> controll

>> modalities. I ended up and am still on significant meds as well

> as

>> having a spinal cord stimulator. During all this my marraige

> failed. To much for my ex-husband. To him I

>> became I liability. This as bad as it was , became the best

> thing that

>> could have happened to me. I met my new husband. He never new

> me pre-disability. Accepts me just

>> as I am. I wound up having a baby girl.......... who I thought

> I could

>> or would never have. Somehow my life is working out with the

> pain. I am now more aware and much more greatful.

>> So that is it in a nutshell.

>> To all the ol'time members HHHiiiiii~ , Laurie, Kathy.

> I miss

>> you guys. Feel

> Well,

>> Teri

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

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The only tried and true way of diagnosing arach is to go in the dura

and see what type of scarring you have. I went through the same

process as you did and my neurosurgeon feared arach up until the

very day of surgery because of the type of pain a I had and location

of tetethering. He opened me up and guess what no arach just local

tethering.

The fact of the matter is that TCS surgery rarely ever causes arach,

it is beleived that other complications cause the condition such as

dyes for myelograms and auto-immune issues. Arach itself involves

tethering, but it is much more complicated.

Which state do you live in? I saw 5 neurosurgeons before doing

surgery number 2. Two believed that it was arach. The others

thought it could be tethering or arach but believed in pursueing the

operation because the chances of arach after TCS surgery are " 3% "

Also I had pain everywhere waste down but was only tethered at L5,

which is for the feet. Nerve pain that results from tethering or

scarring is often more diffuse and not limited to one forseeable

location of tethering.

> >> Hi,

> >> My name is Teri. I have been a member of this group before. I

am

> > so

> >> happy to feel well enough to join again. I will try and

tell a

> > very condensed version of my story. At 33 I found

> >> out that I had a birth defect. Tethered Cord, Spinal lipoma

and

> > Spina

> >> Bifida Occulta. For some unknown reason the tumor decided to

> > grow at

> >> that time. I was married with 3 boys then. I had surgery

> > which while neccessary, caused a condition called

> >> arachnoiditis. As with most of you I went through various

pain

> > controll

> >> modalities. I ended up and am still on significant meds as

well

> > as

> >> having a spinal cord stimulator. During all this my

marraige

> > failed. To much for my ex-husband. To him I

> >> became I liability. This as bad as it was , became the best

> > thing that

> >> could have happened to me. I met my new husband. He never

new

> > me pre-disability. Accepts me just

> >> as I am. I wound up having a baby girl.......... who I

thought

> > I could

> >> or would never have. Somehow my life is working out with the

> > pain. I am now more aware and much more greatful.

> >> So that is it in a nutshell.

> >> To all the ol'time members HHHiiiiii~ , Laurie,

Kathy.

> > I miss

> >> you guys. Feel

> > Well,

> >> Teri

> >

> >

> >

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> > kathy@t...,michelle@t..., rick@t...

> >

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Just a note on Dr. Epstein - he did my first TC surgery at age 18 months and we

chose another surgeon (Dr. McClone) when I retethered at age 5 because my mom

wasn't comfortable with Dr. Epstein, even though she couldn't put a finger on

it. My freshman year at college, I ran into a girl and it just so happened that

she had had surgery for a brain tumor by Dr. Epstein, only their family was

misled and he didn't do the actual surgery. She wound up with permanent and

significant damage from what Dr. Epstein said would be a simple procedure. When

we got my records, it turned out that Epstein didn't operate on me either, even

though he told my parents he had. Read the article below...

Jen

20, SB lipomyelomeningocele L1-2, wheels/crutches, AFOs, detethered five times

(age 18 months, 5 years, 11 years, 14 years, and 19 years)

SURGEONS DID A ‘BAIT & SWITCH': TUMOR TEEN

By SUSAN EDELMAN;

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

STRUGGLING:

Samara Meyers, 19, now a student at Boston College, has spent years overcoming

disabilities after brain surgery when she was 11.

- Wisniewski

March 23, 2003 --

WHEN they learned their 11-year-old daughter had a brain tumor, and

Meyers wanted only the best surgeon to remove it.

The New Jersey couple settled on Dr. Fred Epstein, a Manhattan neurosurgeon

whose work with children had earned him worldwide fame and made him one of the

highest-paid doctors in the city.

In his office before the surgery, Epstein wrapped his arms around the anxious

girl and promised she'd be back at school a couple weeks after the procedure,

the Meyers said. They recall Epstein saying he had a daughter with the same name

and assuring Samara, " You're going to be just fine. "

But Samara was never the same. She suffered a loss of peripheral vision in both

eyes, partial paralysis on the left side and cognitive impairment from a brain

injury during the surgery.

It wasn't until years later, the Meyers say, that they learned Epstein wasn't

their daughter's surgeon. They are now suing him, saying he betrayed their trust

by allowing an associate to do the operation - without ever telling them.

The substitution of surgeons without patient consent is called " ghost surgery " -

and may occur more frequently than the reported cases suggest, experts say.

In their suit, filed in U.S. District Court in Manhattan, the Meyers call their

daughter's case a medical version of " bait and switch. "

" It's so scary, " said Samara, now 19 and still struggling to overcome her

disabilities while attending college. " You go to a doctor who's world famous and

think you're getting the best there is. It turns out you don't even know who

you're getting . . . I feel lied to. "

Epstein's associate, Dr. Ira Richmond Abbott, said in testimony in the suit that

he performed surgery on Samara. He declined The Post's request for an interview.

In his testimony, Abbott said he had " no recall " of specifically what he told

Meyers when they first met the night before the surgery at New York

University Medical Center.

Abbott, who specialized in the temporal lobe tumor from which Samara was

suffering, testified he operated on her with an assistant. Epstein, a brain-stem

tumor expert, did not even scrub for Samara's procedure, Abbott said.

A lawyer for both doctors, Jay Rappaport, said the Meyers were " well aware " of

who would operate on their daughter.

The state Health Department last week launched a probe of whether the Meyers'

right to informed consent was violated.

" Parents faced with putting the health of their child in the hands of medical

professionals deserve nothing less than the truth about who will be performing

the surgery, " said department spokesman Kenny.

The state is reviewing documents and testimony indicating that Epstein wrote his

name as co-surgeon on Abbott's post-operative report. Epstein also wrote to an

insurance company seeking more money for Samara's operation, saying he was

" involved in the procedure " and had used sophisticated tools.

Rappaport said Epstein added his name as co-surgeon because he had " entered the

room " during Samara's operation. Epstein has not testified in the case. He

suffered a brain injury in a bicycle accident in 2000. He has not resumed

practicing medicine, but is helping raise funds for Beth Israel Medical Center's

Institute for Neurology and Neurosurgery, where he is founding director.

The Meyers, who live in Sparta, N.J., chose Dr. Epstein because they thought he

was " the best of the best. "

Before the operation, Meyers recalled Epstein dismissing her concerns

about risks, calling them " too minimal to discuss. " None of those meetings

included Dr. Abbott, the parents say.

The Meyers say Epstein led them to believe that Abbott would be " assisting " him.

They signed a consent form agreeing to let " Epstein/Abbott " operate.

A few days before the surgery, Meyers says she told Epstein: " I know

this is a teaching hospital, but I want to make sure that no one is touching my

daughter but you. "

According to her, Epstein replied, " Of course, I will be the one performing. I

will be the one operating on her. "

The Meyers say Epstein emerged from the operating area in scrubs and told them,

" She's going to be fine. " He then left, saying Abbott would give them details,

they testified.

But Abbott told the father there were complications during the operation, the

surgeon acknowledged in testimony.

Samara has undergone years of therapy, relearning how to do many basic

activities like dressing and fixing her hair.

The Meyers launched their suit in 2000, they say, after a neurologist treating

Samara reviewed her medical records and told them he did not believe Epstein

performed the 1995 surgery.

" The choice of who would operate on our daughter's brain was stolen from us, "

Meyers said.

| On Mon, 25 Oct 2004 10:31:14 -0400 (EDT)

| wrote:

| > Hi,

| I don't mind being put on the spot. That is the great thing about this

| group. The exchange of informations, thoughts and ideas. I have infact

| retethered. That was confirmed about 8 mos after my initial surgery.

| But, it retethered in a place thought to not be causing these

| problems. I had a second opinion by a Doctor who was recommeded by

this group. A

| doctor Epstein. He was thought to be the best in this area. He reviewed

| all my MRI's CT scans , oral history ect. The determination was

| Arachnoiditis to which my Neurosurgeon agreed. I remember thinking at

the time......... that things were going on

| with me that did not seem common in this group. There are great

Arachnoiditis web sites as well. Although I have never

| found another that is as friendly and comforting as this group.

Feel Well,

| Teri

=========================

Jen Fitz-Roy

Boston College LSOE '06

fitzroyj@...

6-2443

" Character cannot be formed in ease and quiet. Only through experience of trial

and suffering can the soul be strengthened, ambition inspired, and success

achieved. "

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I found the entire Beth Israel center pretty shady as well, they did

my first surgery(Dr. Jallo), and I saw Dr. Abbott regarding

retether. Glad I trusted my gut and just left.

> | > Hi,

> | I don't mind being put on the spot. That is the great

thing about this

> | group. The exchange of informations, thoughts and ideas.

I have infact

> | retethered. That was confirmed about 8 mos after my

initial surgery.

> | But, it retethered in a place thought to not be causing

these

> | problems. I had a second opinion by a Doctor who was

recommeded by this group. A

> | doctor Epstein. He was thought to be the best in this

area. He reviewed

> | all my MRI's CT scans , oral history ect. The

determination was

> | Arachnoiditis to which my Neurosurgeon agreed. I

remember thinking at the time......... that things were going on

> | with me that did not seem common in this group. There

are great Arachnoiditis web sites as well. Although I have never

> | found another that is as friendly and comforting as this

group. Feel

Well,

> |

Teri

> =========================

> Jen Fitz-Roy

> Boston College LSOE '06

> fitzroyj@b...

> 6-2443

>

> " Character cannot be formed in ease and quiet. Only through

experience of trial and suffering can the soul be strengthened,

ambition inspired, and success achieved. "

Link to comment
Share on other sites

> I agree. There is only one tried and true way of diagnosing. For me.....

> not a good enough reason to go under the knife. Do you have any other

conditions that go along with TCS??? For example,

foot deformities, spina bifida , lipomas ect? I have a spina bifida

occulta and large spinal lipoma. The debate

among the neurosurgeons I went to for opinions before my surgery was

what was actually causing the problems. Two of the neurosurgeons felt

because the onset of symptoms were for me at 33 years of age, no

traumatic history ie fall, car accident, and 3 childbirths with no

hint of problem....that perhaps something caused the lipoma to grow. I

always found that theory interesting because at the time I had a fatty

tumor which had developed on my side. So I could also look towards nerve

damage due to growth or reduction

of the spinal lipoma as cause. I have tended in the past few years looked

at things regarding my

health more anacdotal than clinically. 1. There would have to be a

very good reason clinically for me to undergo a second surgery and 2.

What is working to make my life not just in live mode but thrive. I find

doctors just like to try and put square pegs into round holes.

The diagnosis of Arachnoiditis may or may not be justified. The

symptoms are similar. The methods to reduce pain are helping me...so I

rejoin this group to question. Make sure that I myself am not missing

something that could help me ect.

Feel Well,

Teri

>

> The only tried and true way of diagnosing arach is to go in the dura

> and see what type of scarring you have. I went through the same

> process as you did and my neurosurgeon feared arach up until the

> very day of surgery because of the type of pain a I had and location

> of tetethering. He opened me up and guess what no arach just local

> tethering.

>

> The fact of the matter is that TCS surgery rarely ever causes arach,

> it is beleived that other complications cause the condition such as

> dyes for myelograms and auto-immune issues. Arach itself involves

> tethering, but it is much more complicated.

>

> Which state do you live in? I saw 5 neurosurgeons before doing

> surgery number 2. Two believed that it was arach. The others

> thought it could be tethering or arach but believed in pursueing the

> operation because the chances of arach after TCS surgery are " 3% "

>

> Also I had pain everywhere waste down but was only tethered at L5,

> which is for the feet. Nerve pain that results from tethering or

> scarring is often more diffuse and not limited to one forseeable

> location of tethering.

>

>

>> >> Hi,

>> >> My name is Teri. I have been a member of this group before. I

> am

>> > so

>> >> happy to feel well enough to join again. I will try and

> tell a

>> > very condensed version of my story. At 33 I found

>> >> out that I had a birth defect. Tethered Cord, Spinal lipoma

> and

>> > Spina

>> >> Bifida Occulta. For some unknown reason the tumor decided to

>> > grow at

>> >> that time. I was married with 3 boys then. I had surgery

>> > which while neccessary, caused a condition called

>> >> arachnoiditis. As with most of you I went through various

> pain

>> > controll

>> >> modalities. I ended up and am still on significant meds as

> well

>> > as

>> >> having a spinal cord stimulator. During all this my

> marraige

>> > failed. To much for my ex-husband. To him I

>> >> became I liability. This as bad as it was , became the best

>> > thing that

>> >> could have happened to me. I met my new husband. He never

> new

>> > me pre-disability. Accepts me just

>> >> as I am. I wound up having a baby girl.......... who I

> thought

>> > I could

>> >> or would never have. Somehow my life is working out with the

>> > pain. I am now more aware and much more greatful.

>> >> So that is it in a nutshell.

>> >> To all the ol'time members HHHiiiiii~ , Laurie,

> Kathy.

>> > I miss

>> >> you guys. Feel

>> > Well,

>> >> Teri

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > Not Medical Advice. We Are Not Doctors.

>> > Need help with the list? Email

>> > kathy@t...,michelle@t..., rick@t...

>> >

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Share on other sites

> Wow, that is pretty interesting. He did the consult for me post surgery

> when I started having all my problems. The last I had heard he had been

> hit by a car while biking and was in a comma . DR. Jallo was heading the

> unit. This by the way was 2 year old information. ANd Dr. Jallo had told

> my high risk ob that I could try and have a normal delivery with my

> daughter. Noooo Way! WE played it safe and had the c-section.

> Just a note on Dr. Epstein - he did my first TC surgery at age 18

> months and we chose another surgeon (Dr. McClone) when I retethered at

> age 5 because my mom wasn't comfortable with Dr. Epstein, even though

> she couldn't put a finger on it. My freshman year at college, I ran

> into a girl and it just so happened that she had had surgery for a

> brain tumor by Dr. Epstein, only their family was misled and he didn't

> do the actual surgery. She wound up with permanent and significant

> damage from what Dr. Epstein said would be a simple procedure. When we

> got my records, it turned out that Epstein didn't operate on me either,

> even though he told my parents he had. Read the article below...

>

> Jen

> 20, SB lipomyelomeningocele L1-2, wheels/crutches, AFOs, detethered

> five times (age 18 months, 5 years, 11 years, 14 years, and 19 years)

>

>

>

> SURGEONS DID A ‘BAIT & SWITCH': TUMOR TEEN

>

>

>

> By SUSAN EDELMAN;

>

>

>

--------------------------------------------------------------------------------\

>

>

> STRUGGLING:

>

>

> Samara Meyers, 19, now a student at Boston College, has spent years

> overcoming disabilities after brain surgery when she was 11.

>

> - Wisniewski

>

>

> March 23, 2003 --

>

>

>

>

> WHEN they learned their 11-year-old daughter had a brain tumor,

> and Meyers wanted only the best surgeon to remove it.

>

>

> The New Jersey couple settled on Dr. Fred Epstein, a Manhattan

> neurosurgeon whose work with children had earned him worldwide fame and

> made him one of the highest-paid doctors in the city.

>

>

> In his office before the surgery, Epstein wrapped his arms around the

> anxious girl and promised she'd be back at school a couple weeks after

> the procedure, the Meyers said. They recall Epstein saying he had a

> daughter with the same name and assuring Samara, " You're going to be

> just fine. "

>

>

> But Samara was never the same. She suffered a loss of peripheral vision

> in both eyes, partial paralysis on the left side and cognitive

> impairment from a brain injury during the surgery.

>

>

> It wasn't until years later, the Meyers say, that they learned Epstein

> wasn't their daughter's surgeon. They are now suing him, saying he

> betrayed their trust by allowing an associate to do the operation -

> without ever telling them.

>

>

> The substitution of surgeons without patient consent is called " ghost

> surgery " - and may occur more frequently than the reported cases

> suggest, experts say.

>

>

> In their suit, filed in U.S. District Court in Manhattan, the Meyers

> call their daughter's case a medical version of " bait and switch. "

>

>

> " It's so scary, " said Samara, now 19 and still struggling to overcome

> her disabilities while attending college. " You go to a doctor who's

> world famous and think you're getting the best there is. It turns out

> you don't even know who you're getting . . . I feel lied to. "

>

>

> Epstein's associate, Dr. Ira Richmond Abbott, said in testimony in the

> suit that he performed surgery on Samara. He declined The Post's

> request for an interview. In his testimony, Abbott said he had " no

> recall " of specifically what he told Meyers when they first met

> the night before the surgery at New York University Medical Center.

>

>

> Abbott, who specialized in the temporal lobe tumor from which Samara

> was suffering, testified he operated on her with an assistant. Epstein,

> a brain-stem tumor expert, did not even scrub for Samara's procedure,

> Abbott said.

>

>

> A lawyer for both doctors, Jay Rappaport, said the Meyers were " well

> aware " of who would operate on their daughter.

>

>

> The state Health Department last week launched a probe of whether the

> Meyers' right to informed consent was violated.

>

>

> " Parents faced with putting the health of their child in the hands of

> medical professionals deserve nothing less than the truth about who

> will be performing the surgery, " said department spokesman

> Kenny.

>

>

> The state is reviewing documents and testimony indicating that Epstein

> wrote his name as co-surgeon on Abbott's post-operative report. Epstein

> also wrote to an insurance company seeking more money for Samara's

> operation, saying he was " involved in the procedure " and had used

> sophisticated tools.

>

>

> Rappaport said Epstein added his name as co-surgeon because he had

> " entered the room " during Samara's operation. Epstein has not testified

> in the case. He suffered a brain injury in a bicycle accident in 2000.

> He has not resumed practicing medicine, but is helping raise funds for

> Beth Israel Medical Center's Institute for Neurology and Neurosurgery,

> where he is founding director.

>

>

> The Meyers, who live in Sparta, N.J., chose Dr. Epstein because they

> thought he was " the best of the best. "

>

>

> Before the operation, Meyers recalled Epstein dismissing her

> concerns about risks, calling them " too minimal to discuss. " None of

> those meetings included Dr. Abbott, the parents say.

>

>

> The Meyers say Epstein led them to believe that Abbott would be

> " assisting " him. They signed a consent form agreeing to let

> " Epstein/Abbott " operate.

>

>

> A few days before the surgery, Meyers says she told Epstein:

> " I know this is a teaching hospital, but I want to make sure that no

> one is touching my daughter but you. "

>

>

> According to her, Epstein replied, " Of course, I will be the one

> performing. I will be the one operating on her. "

>

>

> The Meyers say Epstein emerged from the operating area in scrubs and

> told them, " She's going to be fine. " He then left, saying Abbott would

> give them details, they testified.

>

>

> But Abbott told the father there were complications during the

> operation, the surgeon acknowledged in testimony.

>

>

> Samara has undergone years of therapy, relearning how to do many basic

> activities like dressing and fixing her hair.

>

>

> The Meyers launched their suit in 2000, they say, after a neurologist

> treating Samara reviewed her medical records and told them he did not

> believe Epstein performed the 1995 surgery.

>

>

> " The choice of who would operate on our daughter's brain was stolen

> from us, " Meyers said.

>

> | On Mon, 25 Oct 2004 10:31:14 -0400 (EDT)

> | wrote:

> | > Hi,

> | I don't mind being put on the spot. That is the great thing

> about this | group. The exchange of informations, thoughts and

> ideas. I have infact | retethered. That was confirmed about 8 mos

> after my initial surgery. | But, it retethered in a place thought

> to not be causing these | problems. I had a second opinion by a

> Doctor who was recommeded by this group. A | doctor Epstein. He

> was thought to be the best in this area. He reviewed | all my

> MRI's CT scans , oral history ect. The determination was |

> Arachnoiditis to which my Neurosurgeon agreed. I remember thinking

> at the time......... that things were going on | with me that did

> not seem common in this group. There are great Arachnoiditis web

> sites as well. Although I have never | found another that is as

> friendly and comforting as this group.

> Feel Well, |

> Teri =========================

> Jen Fitz-Roy

> Boston College LSOE '06

> fitzroyj@...

> 6-2443

>

> " Character cannot be formed in ease and quiet. Only through experience

> of trial and suffering can the soul be strengthened, ambition inspired,

> and success achieved. "

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

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I have every condition that you mentioned. A transitional lipoma,

which is mostly on the left, spina bif. occulta, and foot deformity

on right foot. I actually had full foot reconstruction.

I am not trigger happy for surgery, but I do believe that aquiring

the most correct diagnoses is very important. I also never had a

trauma that triggered symptoms. As far as lipomas are concerned I

have been told that they grow in proportion to body mass...so if you

put on 20-30 lbs over the past3-6 years the lipoma would grow in

proportion to overall body-mass but slowly.

> >> >> Hi,

> >> >> My name is Teri. I have been a member of this group

before. I

> > am

> >> > so

> >> >> happy to feel well enough to join again. I will try and

> > tell a

> >> > very condensed version of my story. At 33 I found

> >> >> out that I had a birth defect. Tethered Cord, Spinal

lipoma

> > and

> >> > Spina

> >> >> Bifida Occulta. For some unknown reason the tumor decided

to

> >> > grow at

> >> >> that time. I was married with 3 boys then. I had surgery

> >> > which while neccessary, caused a condition called

> >> >> arachnoiditis. As with most of you I went through various

> > pain

> >> > controll

> >> >> modalities. I ended up and am still on significant meds as

> > well

> >> > as

> >> >> having a spinal cord stimulator. During all this my

> > marraige

> >> > failed. To much for my ex-husband. To him I

> >> >> became I liability. This as bad as it was , became the

best

> >> > thing that

> >> >> could have happened to me. I met my new husband. He

never

> > new

> >> > me pre-disability. Accepts me just

> >> >> as I am. I wound up having a baby girl.......... who I

> > thought

> >> > I could

> >> >> or would never have. Somehow my life is working out with

the

> >> > pain. I am now more aware and much more greatful.

> >> >> So that is it in a nutshell.

> >> >> To all the ol'time members HHHiiiiii~ , Laurie,

> > Kathy.

> >> > I miss

> >> >> you guys.

Feel

> >> > Well,

> >> >> Teri

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > Not Medical Advice. We Are Not Doctors.

> >> > Need help with the list? Email

> >> > kathy@t...,michelle@t..., rick@t...

> >> >

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