Hello all

[Guest guest]

,

I love your imagry of flying around in a bubble...there is a great

guided imagry CD alot of us have shared for use before surgery which

walks you through the idea that your surgical team is a group of

caring and competent individuals and floating around with you during

surgeyr are your own personal " band of angels " ...so you seem to have

ajump start onmost of us there!

I don't know exactly what your support situation will be at the

hospital, but if you will be there without any family or friends I

would not be too concerned....as long as that works for you. My

husband was up in Boston for the 48hours after each of the two

surgeries and then I felt like I could send him back home because

the staff was very attentive. I did not have anyone stay overnight

with me, although I know had her sister with her...I think it

is pretty indivdual.

I am sure Dr Rand will talk to you about pain control. I think most

of us patients of his had duramorph, which they pack into the spine

before they close you up and it gives you a good long pain free

period...maybe 10-16 hours. The good news/bad news is it has side

effects that necesitates them putting you in ICU..but it is very

effective if you can use morphine products....

Rehab is usually just a different floor on the hospital, but it is a

separate entitity, called Jordan Rehabilitation Hosp....

On the day that you go for your pre-op appointments one of

the " parties " you will meet with is the social worker...and I would

surely let them know that you are going to be on your own a lot of

the time and they will probably make sure you are covered. I had a

number of visits from the Chaplain and she was always a cheerful and

friendly face stopping by to say hi. If you read back you maybe saw

that practically had the whole administratvie offices checking

on her!!

It is a rigorous surgery.....not a day in the park by any

means...but if you are " ready " ....chances are what you gain will be

worth going through the surgeries. Of course your situation may be

different, but you have described your surgeries like they will be

three events, in your mind. If you are anything like me...from your

perspective they are really two surgeries....you only go " out " twice

anyway....stage one will probably be the posterior and then he often

does stage two/three (front/anterior then back/posterior again to

tie it all together) in one day.

They are big surgeries, and there are risks to be sure, but if you

are being told that you can expect a reduction in your pain levels

and an improvement in your daily activity level I sure would have

confidence in that. I am fairly active now and not any pain that is

remarkable for a woman my age (49), nor anything that requires any

pain medication.

You have quit smoking you said...are you able to do any kind of

fitness routine to start to prepare for surgery?

Good luck on the 22nd...be sure to let us know how it goes. Cam

>

> i just wanted to pop in and say hello and let you know that i have

> been reading what i can fom the group via my email delivery.

>

> some people had posted to me, one who has an appointment with Dr

Rand

> on Feb. 22, like I do, and I wanted to find out who so maybe we

could

> have coffee or something. Please feel free to email me with

specifics.

>

> I am also on here as spunkyone_66 so that is me as well. So, wow,

> there are many issues that are brought forth here and that is

amazing

> to me. I was told five years ago that I would need this surgery,

and

> was told by a Dr in Tampa that well, basically he painted a bleak

> picture. Dr Rand has helped with that but his notes said that it

is

> pretty much the same. I will be fused via two or three surgeries

to

> the sacrum, and etc... One thing I find interesting is that he

doesnt

> want to traumatize patients by them wearing 'another' brace. I am

all

> for it if it will help. He said it will be tough, and from what I

get

> from you all, he is correct. Again, I only want it to

> somewhat 'work'.

>

> I do have a question. Since I will be primarily 'alone' during

this,

> does anyone have any information on advocates or how NEBH deals

with

> pain issues post op? Does anyone know what this 'rehab' place

is? I

> am really in the dark and appreciate you all so very much.

>

> Please know that every night before sleep, I mentally 'fly'

around,

> and put protective bubbles around all of us that have been touched

by

> this tremendously difficult issue. Thanks!

>

>

>

[Guest guest]

Dear lisa,

How terrible for your daughter and your family. I looked around online

for paraplegia support groups. Before finding one, I found this:

Re: Need support

Postby Friend » Tue Dec 09, 2008 3:53 am

Wow, he has completed a comprehensive SCI rehab program already? Were

you not provided counseling during his rehab program? Is there none

available at the rehab center as an outpatient? If not, ask his

physician for a referral to a good clinical psychologist or clinical

social worker who can work with both of you. There are also a couple

of caregiver/family member support groups on-line if they do not offer

something like this at his rehab center. This post came from the site:

http://www.spinalinjury.net/phpbb3/viewtopic.php?f=5 & t=1054

Here are a couple of online support groups:

http://www.experienceproject.com/groups/Am-A-Paraplegic/85826

http://search.twitter.com/search?q=paraplegics

Also there seem to be local or state paraplegic support groups. I

would try Googling

Good luck, don't give up. I know you won't.

On Jun 27, 2009, at 11:51 AM, bethlynnae2 wrote:

I know I rarely post on here, but I do read the posts. I'm needing

some help with a new problem that has entered my family. It seems that

my 16 year old daughter has a tumor growing from her spinal cord into

her lung and on her aorta. This is called a Schwannoma. She will be

scheduled for surgery in about 2 weeks. The doctor has informed us

that she will very probably come out of surgery paralyzed from the

chest down. I'm desparately trying to find a support group for her as

a teen and I'm not having much luck. If any of you knows of one,

please let me know. This is going to be a difficult things for her as

she is the top track runner on the girl's team at her high school.

Thank you all for your support.

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

[Guest guest]

thank you so much for finding that for me. It means so much to our family. i

tried googling but didn't get very far. thankyou, thankyou, thankyou again!

Re: Hello all

Dear lisa,

How terrible for your daughter and your family. I looked around online

for paraplegia support groups. Before finding one, I found this:

Re: Need support

Postby Friend » Tue Dec 09, 2008 3:53 am

Wow, he has completed a comprehensive SCI rehab program already? Were

you not provided counseling during his rehab program? Is there none

available at the rehab center as an outpatient? If not, ask his

physician for a referral to a good clinical psychologist or clinical

social worker who can work with both of you. There are also a couple

of caregiver/family member support groups on-line if they do not offer

something like this at his rehab center. This post came from the site:

http://www.spinalinjury.net/phpbb3/viewtopic.php?f=5 & t=1054

Here are a couple of online support groups:

http://www.experienceproject.com/groups/Am-A-Paraplegic/85826

http://search.twitter.com/search?q=paraplegics

Also there seem to be local or state paraplegic support groups. I

would try Googling

Good luck, don't give up. I know you won't.

On Jun 27, 2009, at 11:51 AM, bethlynnae2 wrote:

I know I rarely post on here, but I do read the posts. I'm needing

some help with a new problem that has entered my family. It seems that

my 16 year old daughter has a tumor growing from her spinal cord into

her lung and on her aorta. This is called a Schwannoma. She will be

scheduled for surgery in about 2 weeks. The doctor has informed us

that she will very probably come out of surgery paralyzed from the

chest down. I'm desparately trying to find a support group for her as

a teen and I'm not having much luck. If any of you knows of one,

please let me know. This is going to be a difficult things for her as

she is the top track runner on the girl's team at her high school.

Thank you all for your support.

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

[Guest guest]

It sounds like DR has given you the worse case scenario....has Von

Recklinghausen been ruled out...there are many support groups for

neurofibromatosis....(Von R) there is a support for schwannoma as

well..but they are very small......what kind of surgeon is doing the

surgery..I would guess a vascular as well as neurosurgeon...

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of bethlynnae2

Sent: Saturday, June 27, 2009 10:51 AM

spinal problems

Subject: Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

the doctor didn't mention that disease. He say say that it was as far as he can

tell at this time a schwannoma tumor. This doctor is a neurosugeon at Cooke

children's Medical Center in fort Worth Texas. There will also be a cardiac

surgeon and a thoracic surgeon. He said he believes that this tumor is part of

her nreves in her spine and the only way she would not be paralyzed is if it's

on the cord and not part of the nreves. But he said he does not believe that is

the case. I saw the one for schwannoma, but it didn't look like anyone had

posted in a long time. Thank you so much for your reply.

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

You, your daughter and your entire family will be in my thoughts and prayers

during this difficult time....please let us know the outcome....

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Rice

Mc

Sent: Saturday, June 27, 2009 6:46 PM

spinal problems

Subject: Re: Hello all

the doctor didn't mention that disease. He say say that it was as far as he

can tell at this time a schwannoma tumor. This doctor is a neurosugeon at

Cooke children's Medical Center in fort Worth Texas. There will also be a

cardiac surgeon and a thoracic surgeon. He said he believes that this tumor

is part of her nreves in her spine and the only way she would not be

paralyzed is if it's on the cord and not part of the nreves. But he said he

does not believe that is the case. I saw the one for schwannoma, but it

didn't look like anyone had posted in a long time. Thank you so much for

your reply.

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

,

Please keep in touch with our group. I--and others here, I'm sure--

will be thinking of you and your daughter and would like to be of

help. My son has a close friend who became paraplegic in her 30s.

After being floored by the initial shock, she has bravely been gaining

strength while raising two boys and, sadly now, negotiating her way

through a divorce. My son marvels at her courage. Perhaps she can be

of help to your daughter.

On Jun 27, 2009, at 8:23 PM, Deb wrote:

You, your daughter and your entire family will be in my thoughts and

prayers

during this difficult time....please let us know the outcome....

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of

Rice

Mc

Sent: Saturday, June 27, 2009 6:46 PM

spinal problems

Subject: Re: Hello all

the doctor didn't mention that disease. He say say that it was as far

as he

can tell at this time a schwannoma tumor. This doctor is a neurosugeon

at

Cooke children's Medical Center in fort Worth Texas. There will also

be a

cardiac surgeon and a thoracic surgeon. He said he believes that this

tumor

is part of her nreves in her spine and the only way she would not be

paralyzed is if it's on the cord and not part of the nreves. But he

said he

does not believe that is the case. I saw the one for schwannoma, but it

didn't look like anyone had posted in a long time. Thank you so much for

your reply.

Hello all

I know I rarely post on here, but I do read the posts. I'm needing

some help

with a new problem that has entered my family. It seems that my 16

year old

daughter has a tumor growing from her spinal cord into her lung and on

her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably

come

out of surgery paralyzed from the chest down. I'm desparately trying

to find

a support group for her as a teen and I'm not having much luck. If any

of

you knows of one, please let me know. This is going to be a difficult

things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

Hi . What a terrible thing to happen to a young girl. She must be

terrified... I will certainly be thinking of her, and praying for a good

outcome.

Mr. Google and I get along pretty good, here is more active site for you.

http://spinalcordtumor.homestead.com/SCTA.html

The groups forum:

http://spinalcordtumor.proboards.com/

There are some pretty good outcomes there... hope it helps. I will ask around

the web for you too.

in NH

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in about 2

weeks. The doctor has informed us that she will very probably come out of

surgery paralyzed from the chest down. I'm desparately trying to find a support

group for her as a teen and I'm not having much luck. If any of you knows of

one, please let me know. This is going to be a difficult things for her as she

is the top track runner on the girl's team at her high school. Thank you all for

your support.

[Guest guest]

thank you so much Deb. I will let you know. Her surgery will be scheduled within

the next couple of weeks. They want to assemble the best possible surgical team

and really plan out the surgery. Thank you again for your prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis...does ur daughter have cafe au laut spots..basically marks

that are coffee colored....that is a red flag for nf....u might want to read

about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled within

the next couple of weeks. They want to assemble the best possible surgical team

and really plan out the surgery. Thank you again for your prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

Deb,

How is neurofibramatosis similar to schwannoma?

________________________________

From: Debra f <i_ownaberner@...>

spinal problems ; Rice Mc

<bethlynnae@...>

Sent: Sunday, June 28, 2009 10:05:11 AM

Subject: Re: Hello all

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis. ..does ur daughter have cafe au laut spots..basically marks

that are coffee colored....that is a red flag for nf....u might want to read

about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled within

the next couple of weeks. They want to assemble the best possible surgical team

and really plan out the surgery. Thank you again for your prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

Both arise out of nerve cells......

D

From: spinal problems

[mailto:spinal problems ] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 10:21 AM

spinal problems

Subject: Re: Hello all

Deb,

How is neurofibramatosis similar to schwannoma?

________________________________

From: Debra f <i_ownaberner@... <mailto:i_ownaberner%40> >

spinal problems

<mailto:spinal problems%40> ; Rice Mc

<bethlynnae@... <mailto:bethlynnae%40tx.rr.com> >

Sent: Sunday, June 28, 2009 10:05:11 AM

Subject: Re: Hello all

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis. ..does ur daughter have cafe au laut spots..basically

marks that are coffee colored....that is a red flag for nf....u might want

to read about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled

within the next couple of weeks. They want to assemble the best possible

surgical team and really plan out the surgery. Thank you again for your

prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

thank you so much. I think she is in denial right now as she won't talk about

it. I can sense she is very angry inside right now. thank you so much for your

prayers.

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in about 2

weeks. The doctor has informed us that she will very probably come out of

surgery paralyzed from the chest down. I'm desparately trying to find a support

group for her as a teen and I'm not having much luck. If any of you knows of

one, please let me know. This is going to be a difficult things for her as she

is the top track runner on the girl's team at her high school. Thank you all for

your support.

[Guest guest]

she will have a cardiac surgeon, a thoracic surgeon and her neurosurgeon. she

doesn't not have any of these spots. The only symptoms she has had and they were

very slight is an on going mild cough from the pressure of the tumor on her

lung, and some back pain that was mild to moderate and pain down her leg. the

neurofibromatosis is not in her diagnosis and it was not mentioned at all. So

I'm thinking this is slightly different but maybe in the same cell type family.

thank for that info though and I will ask about it.

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

But only one is a benign tumor right?

________________________________

From: Deb <i_ownaberner@...>

spinal problems

Sent: Sunday, June 28, 2009 11:48:45 AM

Subject: RE: Hello all

Both arise out of nerve cells......

D

From: spinedisorderssuppo rtgroup@gro ups.com

[mailto:spinedisorderssuppo rtgroup@gro ups.com] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 10:21 AM

spinedisorderssuppo rtgroup@gro ups.com

Subject: Re: Hello all

Deb,

How is neurofibramatosis similar to schwannoma?

____________ _________ _________ __

From: Debra f <i_ownaberner <mailto:i_ownaberne r%40. com> >

spinedisorderssuppo rtgroup@gro ups.com

<mailto:spinedisord erssupportgroup% 40groups. com> ; Rice Mc

<bethlynnaetx (DOT) rr.com <mailto:bethlynnae% 40tx.rr.com> >

Sent: Sunday, June 28, 2009 10:05:11 AM

Subject: Re: Hello all

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis. ..does ur daughter have cafe au laut spots..basically

marks that are coffee colored....that is a red flag for nf....u might want

to read about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled

within the next couple of weeks. They want to assemble the best possible

surgical team and really plan out the surgery. Thank you again for your

prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

They both are.....schwannoma are also benign....

Deb

From: spinal problems

[mailto:spinal problems ] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 1:21 PM

spinal problems

Subject: Re: Hello all

But only one is a benign tumor right?

________________________________

From: Deb <i_ownaberner@... <mailto:i_ownaberner%40> >

spinal problems

<mailto:spinal problems%40>

Sent: Sunday, June 28, 2009 11:48:45 AM

Subject: RE: Hello all

Both arise out of nerve cells......

D

From: spinedisorderssuppo rtgroup@gro ups.com

[mailto:spinedisorderssuppo rtgroup@gro ups.com] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 10:21 AM

spinedisorderssuppo rtgroup@gro ups.com

Subject: Re: Hello all

Deb,

How is neurofibramatosis similar to schwannoma?

____________ _________ _________ __

From: Debra f <i_ownaberner <mailto:i_ownaberne r%40. com> >

spinedisorderssuppo rtgroup@gro ups.com

<mailto:spinedisord erssupportgroup% 40groups. com> ; Rice

Mc

<bethlynnaetx (DOT) rr.com <mailto:bethlynnae% 40tx.rr.com> >

Sent: Sunday, June 28, 2009 10:05:11 AM

Subject: Re: Hello all

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis. ..does ur daughter have cafe au laut spots..basically

marks that are coffee colored....that is a red flag for nf....u might want

to read about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled

within the next couple of weeks. They want to assemble the best possible

surgical team and really plan out the surgery. Thank you again for your

prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

,

I know the perfect person to inspire you and your daughter! I went to

highschool with Judy Siegle, and although her situation is a little different in

how her paralization came about, she is an athletic inspiration! She holds

national records in the para olympics and more! She plays wheelchair basketball,

races, skis, you name it! And, I believe this can be true for your daughter as

well! Judy was an exceptional runner and athlete in high school when this

happened to her.

Her father was a coach and encouraged her over and again! So, family support is

vital to your daughters recovery as well! Her entire family surrounded her with

encouragement daily!

She has done more than I could ever do in my lifetime of chronic pain!

I remember Judy and her struggles from the very beginning, and she had a long

recuperation process...but her life is an inspiration to all!

See: http://judysiegle.squarespace.com/

Her personal email address is listed on the page as well.

Her e-mail is: judysiegle@... (I'm not sure if posts this -so please

write to her. I'll let her know a little of your situation.)

She is a counselor! Her book and life are an inspiration! And, if you can get

to her as well as the book before your daughters surgery, she may be able to

assist with the outcome.

Here is some more information on Judy!

http://www.alohapublishing.com/dontmissyourboat/cobios.asp?id=34http://www.minne\

sotaspeakers.com/html/judy_siegle_nd.htm

http://www.danieljvance.com/disabledweek111.htm

Please e-mail me personally if you have any questions. But, this is the best

person in the world that I think can help you!

>

> I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in about 2

weeks. The doctor has informed us that she will very probably come out of

surgery paralyzed from the chest down. I'm desparately trying to find a support

group for her as a teen and I'm not having much luck. If any of you knows of

one, please let me know. This is going to be a difficult things for her as she

is the top track runner on the girl's team at her high school. Thank you all for

your support.

>

[Guest guest]

I didn't think that neurofibromatosis was a single tumor. But I havent looked it

up at all!

________________________________

From: Deb <i_ownaberner@...>

spinal problems

Sent: Sunday, June 28, 2009 3:17:24 PM

Subject: RE: Hello all

They both are.....schwannoma are also benign....

Deb

From: spinedisorderssuppo rtgroup@gro ups.com

[mailto:spinedisorderssuppo rtgroup@gro ups.com] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 1:21 PM

spinedisorderssuppo rtgroup@gro ups.com

Subject: Re: Hello all

But only one is a benign tumor right?

____________ _________ _________ __

From: Deb <i_ownaberner <mailto:i_ownaberne r%40. com> >

spinedisorderssuppo rtgroup@gro ups.com

<mailto:spinedisord erssupportgroup% 40groups. com>

Sent: Sunday, June 28, 2009 11:48:45 AM

Subject: RE: Hello all

Both arise out of nerve cells......

D

From: spinedisorderssuppo rtgroup@gro ups.com

[mailto:spinedisord erssuppo rtgroup@gro ups.com] On Behalf Of

Babbitt

Sent: Sunday, June 28, 2009 10:21 AM

spinedisorderssuppo rtgroup@gro ups.com

Subject: Re: Hello all

Deb,

How is neurofibramatosis similar to schwannoma?

____________ _________ _________ __

From: Debra f <i_ownaberner <mailto:i_ownaberne r%40. com> >

spinedisorderssuppo rtgroup@gro ups.com

<mailto:spinedisord erssupportgroup% 40groups. com> ; Rice

Mc

<bethlynnae@ tx. rr.com <mailto:bethlynnae% 40tx.rr.com> >

Sent: Sunday, June 28, 2009 10:05:11 AM

Subject: Re: Hello all

a vascular surgeon if not a cardio thoracic sounds like a good idea....4give

me...cant remember if u already stated that...so just making sure..ask about

neurofibromatosis. ..does ur daughter have cafe au laut spots..basically

marks that are coffee colored....that is a red flag for nf....u might want

to read about nf as its slightly similiar....

deb rn

----------

Sent from my Verizon Wireless mobile phone

- Re: Hello all

thank you so much Deb. I will let you know. Her surgery will be scheduled

within the next couple of weeks. They want to assemble the best possible

surgical team and really plan out the surgery. Thank you again for your

prayers. lisa

Hello all

I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in

about 2 weeks. The doctor has informed us that she will very probably come

out of surgery paralyzed from the chest down. I'm desparately trying to find

a support group for her as a teen and I'm not having much luck. If any of

you knows of one, please let me know. This is going to be a difficult things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

, Can I email you? Hugs, April

Hello all

I know I rarely post on here, but I do read the posts. I'm needing

some help

with a new problem that has entered my family. It seems that my 16

year old

daughter has a tumor growing from her spinal cord into her lung and

on her

aorta. This is called a Schwannoma. She will be scheduled for surgery

in

about 2 weeks. The doctor has informed us that she will very probably

come

out of surgery paralyzed from the chest down. I'm desparately trying

to find

a support group for her as a teen and I'm not having much luck. If

any of

you knows of one, please let me know. This is going to be a difficult

things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

Wow! That is great to hear! I will a-mail her. Our entire family is very

supportive and willing to do whatever they can and need to for . She is

still not wanting to talk about, but I will let her know when she is ready to

talk about it about the great things she will still be able to and what Judy

has accomplished. Thank you so much for sharing this info with me.

Re: Hello all

,

I know the perfect person to inspire you and your daughter! I went to

highschool with Judy Siegle, and although her situation is a little different in

how her paralization came about, she is an athletic inspiration! She holds

national records in the para olympics and more! She plays wheelchair basketball,

races, skis, you name it! And, I believe this can be true for your daughter as

well! Judy was an exceptional runner and athlete in high school when this

happened to her.

Her father was a coach and encouraged her over and again! So, family support

is vital to your daughters recovery as well! Her entire family surrounded her

with encouragement daily!

She has done more than I could ever do in my lifetime of chronic pain!

I remember Judy and her struggles from the very beginning, and she had a long

recuperation process...but her life is an inspiration to all!

See: http://judysiegle.squarespace.com/

Her personal email address is listed on the page as well.

Her e-mail is: judysiegle@... (I'm not sure if posts this -so please

write to her. I'll let her know a little of your situation.)

She is a counselor! Her book and life are an inspiration! And, if you can get

to her as well as the book before your daughters surgery, she may be able to

assist with the outcome.

Here is some more information on Judy!

http://www.alohapublishing.com/dontmissyourboat/cobios.asp?id=34http://www.minne\

sotaspeakers.com/html/judy_siegle_nd.htm

http://www.danieljvance.com/disabledweek111.htm

Please e-mail me personally if you have any questions. But, this is the best

person in the world that I think can help you!

>

> I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in about 2

weeks. The doctor has informed us that she will very probably come out of

surgery paralyzed from the chest down. I'm desparately trying to find a support

group for her as a teen and I'm not having much luck. If any of you knows of

one, please let me know. This is going to be a difficult things for her as she

is the top track runner on the girl's team at her high school. Thank you all for

your support.

>

[Guest guest]

There is also the story of Cody Unser, race car driver Al Unser's daughter who

was stricken with the same disease I had, Tranverse Myelitis, but it left her

parylzed from the waist down at age 12. She is in the May issue of Readers

Digest, and also has a documentary coming out next month. That info is here:

http://www.redlands.edu/cody/movie.html

Re: Hello all

,

I know the perfect person to inspire you and your daughter! I went to

highschool with Judy Siegle, and although her situation is a little different in

how her paralization came about, she is an athletic inspiration! She holds

national records in the para olympics and more! She plays wheelchair basketball,

races, skis, you name it! And, I believe this can be true for your daughter as

well! Judy was an exceptional runner and athlete in high school when this

happened to her.

Her father was a coach and encouraged her over and again! So, family support

is vital to your daughters recovery as well! Her entire family surrounded her

with encouragement daily!

She has done more than I could ever do in my lifetime of chronic pain!

I remember Judy and her struggles from the very beginning, and she had a long

recuperation process...but her life is an inspiration to all!

See: http://judysiegle.squarespace.com/

Her personal email address is listed on the page as well.

Her e-mail is: judysiegle@... (I'm not sure if posts this -so please

write to her. I'll let her know a little of your situation.)

She is a counselor! Her book and life are an inspiration! And, if you can get

to her as well as the book before your daughters surgery, she may be able to

assist with the outcome.

Here is some more information on Judy!

http://www.alohapublishing.com/dontmissyourboat/cobios.asp?id=34http://www.minne\

sotaspeakers.com/html/judy_siegle_nd.htm

http://www.danieljvance.com/disabledweek111.htm

Please e-mail me personally if you have any questions. But, this is the best

person in the world that I think can help you!

>

> I know I rarely post on here, but I do read the posts. I'm needing some help

with a new problem that has entered my family. It seems that my 16 year old

daughter has a tumor growing from her spinal cord into her lung and on her

aorta. This is called a Schwannoma. She will be scheduled for surgery in about 2

weeks. The doctor has informed us that she will very probably come out of

surgery paralyzed from the chest down. I'm desparately trying to find a support

group for her as a teen and I'm not having much luck. If any of you knows of

one, please let me know. This is going to be a difficult things for her as she

is the top track runner on the girl's team at her high school. Thank you all for

your support.

>

[Guest guest]

But of course!

________________________________

From: April <nanny04@...>

spinal problems

Sent: Sunday, June 28, 2009 6:52:03 PM

Subject: Re: Hello all

, Can I email you? Hugs, April

Hello all

I know I rarely post on here, but I do read the posts. I'm needing

some help

with a new problem that has entered my family. It seems that my 16

year old

daughter has a tumor growing from her spinal cord into her lung and

on her

aorta. This is called a Schwannoma. She will be scheduled for surgery

in

about 2 weeks. The doctor has informed us that she will very probably

come

out of surgery paralyzed from the chest down. I'm desparately trying

to find

a support group for her as a teen and I'm not having much luck. If

any of

you knows of one, please let me know. This is going to be a difficult

things

for her as she is the top track runner on the girl's team at her high

school. Thank you all for your support.

[Guest guest]

Dyann,

Just how long after surgery someone feels pain, is individual, as is our spines and what was done to them. What does Dr. Horton say about the pain ? Did he insist you get off pain meds or did you? Did you step down in strength, or just stop? Were muscle relaxers in the mix?

I was off all pain meds at three months post op, and went off them gradually, and only completely stopped because I didn't have anymore pain. Did I get sore, sure, but that was normal, as everything was adjusting to my new upright stance. I'd say go over this with your doc, but know you are still early in the recovery, and having pain at three months isn't unusual, many do, frustrating I know, but this all takes a LOT of time.

When you say " I feel okay but not great during the day", could you share more? Do you feel you have a lack of endurance, or that positionally you are better upright than sitting or lying down. I still feel my best after 8 years, when I'm walking, less laying down, but even less sitting. I'd always rather laydown than sit, and would always rather walk than lay down. Weird hunh, reverse for me too from before surgery.

Being in pain doesn't serve you or your recovery, so I'd speak to your doc, and see if something mild could get you more comfortable and able to sleep better. I wish this was a one size fits all thing, but know time will be your partner.

Journal whats going on with you, for you, for your doc, and for the sence of progress. It's easy at this stage to drown in the gloomies when forward progress seems to stall, and you hit a wall. By journaling you can see either progress, even small moments, or if a real problem is showing up. Also know that while there are quite a few of you in recovery mode, not all of you will recover at the same pace, so don;t get down by others seemingly faster recovery pace than yours.

As always your doc is key in all this, but if you journal it all, he will have a complete picture of whats going on, and can help you better. Time usually works this all out, but any new or sharp pain should be talked over with your surgeon.

Hang in there, I know, it's easy to say, but we get it.

Colorado Springs

[ ] Hello All

Hello Twisted Spine Sisters,I was wondering if I am healing normally. Should I still be feeling pain 3 months out?Now that I'm off the narcotics and the numb spots are starting to come alive, I'm having a lot of pain at night, 8-10pm. I can't take Tylenol this late because it keeps me up for hours. During the day, I feel OK, not great, but generally very little pain. Its the opposite of before the surgery. Before I could lay down and it would relieve the pain. Now laying down seems to exacerbate the pain. And when I try to lay on my side, I get very sore.How long before you guys were able to go an entire day and night without any pain? Should I be worried?-Dyann

[Guest guest]

Dyann,

It is so hard to know or understand exactly what another person is feeling when

they talk about pain. Is it a nervey kind of pain, a bone kind of pain...or a

muscle pain/sorness?

At 3 months out, I was just about off the percoset...but it wasn't until at

least 10 months that I realized that just the jostling in my seat riding down

out dirt road didn't hurt me anymore...that was kind of a deep ache, and I

suspect that indicated that everything bone/implant-wise was really becoming

solid by then.

Well into the first year I noted that all the long spinal erector muscles that

have to work in a new way would be exhausted from holding me up in my new

posture. I would lay down at night and feel soreness. Of course, I also was

continuing to do more and more as I resumed more and more activities...so while

I think it was a gradual building up process, to this day, I do not believe that

process really completed itself until fairly recently (I am saying somewhere in

the 3-4 year mark). I do not say that to scare you...I am just trying to say

that this healing really does take a long time, depending on what your

definition of " healed " is.

makes good points with reference to talking to your surgeon or his nurse

if you feel that you have moved " backwards " in your progression and can not

attribute it to any new activity. A journal really does help you see if a

pattern exists or is emerging with regard to pain...and can help your doctor

make recommendations. It is also true that you don't want pain to get in the way

of your healing...you need to sleep well at night, and you also need to be able

to move so you become stronger.

Lastly, I would also say that you are coming in to a period of healing that many

people find very frustrating. I know you have been a member of our group for

long enough to have read time and again how long the recovery from this surgery

is, but like all of us, you dont really hear that message on the front side of

surgery. Sure, you may be off meds, driving, back to work even....but you are

still a long way from a solid fusion or having rebuilt your musculature.

Everyone around you is beginning to be just a tad tired of your continued

needs...and so are you. You begin to wonder if this is the best it will ever get

and it frightens you...because you really thought that after 12 weeks you would

be back to " good as new " . I can honestly say that I don't know of one patient

that has bounced back at 12 weeks and never had continued bouts of pain or had

to make continued accommodations to their new and still healing body. And that,

my friend, is why we have this support group! About now, we are probably the

only people, other than your doctor, that know that you have a bit of a road

ahead of you.

Please dont take this to mean that your pain will never go away, or that we are

minimizing it. In fact, please talk to the doctor if you have even the littlest

suspicion that something isn't right. But if after you get an answer from them

that gives you the " all clear " and still have painful periods...know that time

and strengthening can also work wonders.

Thats my $.02 for today!

Take Care, Cam

[Guest guest]

HI Dyann,

Certainly, call your surgeon. But, I don't think that being in pain

at three months post-op is at all unusual. Many people need pain meds

for a lot longer than 3 months, me included. I was on MS COntin for 6

months post op. This is a very major, complex surgery, with a very

long recovery period. Honestly, i don't see how anyone can believe

that they would be pain free at three months. My advice is to take

it slow and listen to your body. Pain cures nothing. In fact, it

delays healing. So please call your doc and get help.

Bonnie