Re: TC & Pregnancy - Evelyn

[Guest guest]

Thank you Jenn.

This sounds super scary

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

,

If you decide against pregnancy, I've heard some amazing stories about adoption.

In particular adoptions from China, it's fairly simple to get a baby girl from

there. Ironically, Chinese seem to have a higher incidence of tsc. Just

something I thought you might like to think about. Congratulations on your

marriage!

Holly

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 1:27:04 PM

Subject: TC & Pregnancy -

,

You would need to talk to a high risk OB before getting pregnant. First,

having a NTD, you will probably need to take an Rx of folic acid a minimum

of 30 days before conceiving to help insure your child is not born with a

NTD. Additionally, the lithotomy position and all the straining of

childbirth is known to caues an asymptomatic tether to become symptomatic.

If Frim said no more epidurals, then it is unlikely that you would be able

to have one during childbirth. If there is no more space, then there is no

more space. I would guess that if Frim and and high risk OB said you could

go ahead with pregnancy, then you might have to have general anesthesia for

birthing. There is also the concern with the meds you are on - can they be

taken during pregnancy w/o harm to the fetus. Most anti-epileptics cannot be

taken during pregnancy. Narcotics, well managed can be possible, but often

the fetus is born addicted and will have to detox (no SS would be involved,

bc the narcotics would be in your system legally and managed by a MD, but is

again, something to consider). Also, with all the pain you are experiencing,

a pregnancy may make it worse, given the amount of pressure the baby would

put on your lower back. Any b & b issues you have (especially bladder) could

also be made worse during the pregnancy from the weight of the baby on your

bladder. This is something you really need Frim and a high risk OB to

collaborate on to see if it is possible.

Jenn

On Mon, Apr 11, 2011 at 12:19 PM, Dybowski wrote:

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like

one naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

If and when my dtr gets pregnant, I hope she opts for a C section tho I know

there,are more risks to the mom ... perhaps that is crazy. Sigh! Best good

wishes, ! When the time comes, let us know what you learn about

pregnancy. For now, just have a great time at your wedding!

Sent from my Verizon Wireless Phone

----- Reply message -----

Date: Mon, Apr 11, 2011 12:53 pm

Subject: TC & Pregnancy -

To: <tetheredspinalcord >

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like

one naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

Hi ,

This is not a recommendation in any way, shape or form, but I have four children

and because we did not know about the Lipomeningocele, I had them all vaginally.

Additionally, because our children were born in the early 80's which was the

period of " natural childbirth = no pain meds at all " , all births were without

any help of oral or intrathecal pain meds (I DO NOT recommend this).

My point though is that it wasn't until the birth of my fourth child and then a

terrible fall down cellar stairs that I began to notice problems. It wasn't

until about 8 years later that I was diagnosed (I was not seeking help though -

I just kept thinking the problems were small when taken by themselves and I

never put them together as a related issue).

I had issues as a child, but they stopped when I reached full height and

although my parents knew I had this condition, for their own reasons, they never

told me or my pediatrician (I was born in Oregon, but we moved to my parents'

home state of Mass when I was 4/5). I have the dimple/stork bite and it was

open at birth, but our pediatrician either never noticed this mark or didn't put

it all together.

At any rate - having children with tcs is not always a life sentence of

increased symptoms. (from our list) had a baby about 4 years ago? She

did great and if I remember correctly, it was also her fourth child.

Just a personal story ...

Kathy

Re: TC & Pregnancy -

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like one

naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

I'm 26. I did ivf. Had one baby via sedated c-section. My neuro and ob dr worked

hand in hand whole pregnancy. I was on diauildid most of pregnancy. Emma is

going to be 2 on apr 23 she was born addiction free but the meds at the time

were enough to get me thru. Would I do it again? No am I glad I did it once and

have one happy healthy child? Yes. Do I think she was born with tsc even though

I did all the extra meds and prepped. Yes I do but for now drs are saying no but

well see as she gets older I guess.

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like one

naturally now and adoption! (if the docs agree)

> I didn't realize TC would be such a huge obstacle in this!

>

>

>

>

>

> >

>

> >

>

> > Oh wow! That is very interesting. Now I don't know if I told you this but

>

> > Dr. Frim said no more epidurals for me. I have no space in my lower back,

>

> > only mid. I wonder how this will work when I have a child! O.O

>

> > I guess that would make total sense. Almost like in MS/cancer where they

>

> > try to reset the cells/neurons...

>

> > My major concern is having children in the next 2 years or so. Nevermind

>

> > this wedding we are planning for. I really need to get some answers ASAP.

>

> > I am just wondering how I bring all of this up to her and have this

>

> > addressed. I am sad we let it get this far. Have been spending a lot of

>

> > time in pain and feeling sorry for myself. More than when I was DX with TC.I

>

> > would like to not lose my job etc. and get working on trying to fix this. I

>

> > am up for anything at this point. If the ketamine had a 50% chance of

>

> > working I would take some vacation time LOL

>

> >

>

> >

>

> >

>

>

[Guest guest]

I think I'm the she's talking about. I had my fourth baby 7 years ago

-- time flies, Kathy.

I had my first three vaginally, under the full belief that a) my spina bifida

wouldn't be passed to them and natural childbirth wasn't a risk for me. I had

Dylan, the youngest, c-section. I was taken off all pain meds and put on

flexeril. I had to swallow a lot of pain, but I'm good at that and it was worth

it to have a child without addiction issues. If a woman chooses to take pain

meds, I don't judge. I managed without them, but then again, I left the hospital

two days after my c-section and went shopping on the way home. To say my pain

tolerance is high is an understatement. So I don't think there is anything wrong

with needing to take pain meds.

My first problem with my spine was three years after my first was born. The

second time I had a problem was a few years after my third was born. My third

baby was enormous. 9 lb, 2 oz, and I'm only 5 ft tall. I knew when he was coming

out that something was going on in my back.

Now, I'm good. My symptoms from TCS have subsided. At 43, I am in better shape

than I was at 31. To look at TCS as sentence to life in hell is offensive to

those of us who live with the symptoms of this every day. Our lives have

quality, every single one of us. The trick is shifting expectations to find the

quality again once life changes. It drives me crazy when my mom apologizes to me

for my problems. I'm not miserable. Even when I could barely walk 100 yards, I

wasn't living a bad life. It is what we make it, nothing more, nothing less.

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 2:08:26 PM

Subject: Re: TC & Pregnancy -

Hi ,

This is not a recommendation in any way, shape or form, but I have four children

and because we did not know about the Lipomeningocele, I had them all vaginally.

Additionally, because our children were born in the early 80's which was the

period of " natural childbirth = no pain meds at all " , all births were without

any help of oral or intrathecal pain meds (I DO NOT recommend this).

My point though is that it wasn't until the birth of my fourth child and then a

terrible fall down cellar stairs that I began to notice problems. It wasn't

until about 8 years later that I was diagnosed (I was not seeking help though -

I just kept thinking the problems were small when taken by themselves and I

never put them together as a related issue).

I had issues as a child, but they stopped when I reached full height and

although my parents knew I had this condition, for their own reasons, they never

told me or my pediatrician (I was born in Oregon, but we moved to my parents'

home state of Mass when I was 4/5). I have the dimple/stork bite and it was

open at birth, but our pediatrician either never noticed this mark or didn't put

it all together.

At any rate - having children with tcs is not always a life sentence of

increased symptoms. (from our list) had a baby about 4 years ago? She

did great and if I remember correctly, it was also her fourth child.

Just a personal story ...

Kathy

Re: TC & Pregnancy -

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like one

naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

Kathy and ,

Thanks for that view that it is possible. I never meant to suggest that it

wasn't possible or would definitely make things worse. I just wanted to

point out that there are a lot of considerations when you're dealing with TC

- especially when its currently symptomatic. And given 's statement

that Frim said no more epidurals. I just thought it was important to make

sure she consulted with a high risk OB before trying to conceive. I know it

can be done and be done safely. It just takes a little more planning.

BTW - I'm a happy adoption story. My parents adopted me as an infant. In

fact, just days before Christmas, I finally got to talk to my birth mother.

Only took 35 years for us to find each other. I also have been able to talk

to my birth father. I grew up as an only child and now found out I have 6

half-siblings from my birth father (the youngest of which is only 10!). I'm

sure it was a shock for my oldest half-sister to find out she isn't the

" oldest " anymore - LOL. I'm planning a trip to St.L the week before Memorial

Day (which also happens to be my birthday week) to meet everyone. I can't

wait. But, mom and dad will always be mom and dad and I love them. They have

been incredibly supportive. The birth family issue isn't as great now, since

a lot of adoptions are open. They didn't have such an animal when I was

adopted.

, I somehow missed your info about your marriage. So sorry.

Congratulations are in order!

Jenn

>

>

> Hi ,

>

> This is not a recommendation in any way, shape or form, but I have four

> children and because we did not know about the Lipomeningocele, I had them

> all vaginally. Additionally, because our children were born in the early

> 80's which was the period of " natural childbirth = no pain meds at all " , all

> births were without any help of oral or intrathecal pain meds (I DO NOT

> recommend this).

>

> My point though is that it wasn't until the birth of my fourth child and

> then a terrible fall down cellar stairs that I began to notice problems. It

> wasn't until about 8 years later that I was diagnosed (I was not seeking

> help though - I just kept thinking the problems were small when taken by

> themselves and I never put them together as a related issue).

>

> I had issues as a child, but they stopped when I reached full height and

> although my parents knew I had this condition, for their own reasons, they

> never told me or my pediatrician (I was born in Oregon, but we moved to my

> parents' home state of Mass when I was 4/5). I have the dimple/stork bite

> and it was open at birth, but our pediatrician either never noticed this

> mark or didn't put it all together.

>

> At any rate - having children with tcs is not always a life sentence of

> increased symptoms. (from our list) had a baby about 4 years ago?

> She did great and if I remember correctly, it was also her fourth child.

>

> Just a personal story ...

>

> Kathy

>

>

> Re: TC & Pregnancy -

>

> Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like

> one naturally now and adoption! (if the docs agree)

> I didn't realize TC would be such a huge obstacle in this!

>

>

>

>

>

> >

>

> >

>

> > Oh wow! That is very interesting. Now I don't know if I told you this but

>

> > Dr. Frim said no more epidurals for me. I have no space in my lower back,

>

> > only mid. I wonder how this will work when I have a child! O.O

>

> > I guess that would make total sense. Almost like in MS/cancer where they

>

> > try to reset the cells/neurons...

>

> > My major concern is having children in the next 2 years or so. Nevermind

>

> > this wedding we are planning for. I really need to get some answers ASAP.

>

> > I am just wondering how I bring all of this up to her and have this

>

> > addressed. I am sad we let it get this far. Have been spending a lot of

>

> > time in pain and feeling sorry for myself. More than when I was DX with

> TC.I

>

> > would like to not lose my job etc. and get working on trying to fix this.

> I

>

> > am up for anything at this point. If the ketamine had a 50% chance of

>

> > working I would take some vacation time LOL

>

> >

>

> >

>

> >

>

>

[Guest guest]

Yep, you are the one and only I was talking about! I like four years

ago better though - seven means I'm way older than I realize ;-)

Kathy

Re: TC & Pregnancy -

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like one

naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

Now, I'm good. My symptoms from TCS have subsided. At 43, I am in better shape

than I was at 31. To look at TCS as sentence to life in hell is offensive to

those of us who live with the symptoms of this every day. Our lives have

quality, every single one of us. The trick is shifting expectations to find the

quality again once life changes. It drives me crazy when my mom apologizes to me

for my problems. I'm not miserable. Even when I could barely walk 100 yards, I

wasn't living a bad life. It is what we make it, nothing more, nothing less.

The above could not have been said better ! Love when you have time to

participate!

Kathy

[Guest guest]

Thanks ladies. I appreciate all the views.We got married last year July 31st

before my diagnosis. I was getting really bad, we were engaged and I had no

insurance. No doctor would take me. I guess they figured we would go straight to

injections and how could I afford that?So we got married in a court house, BUT

we have the " official " wedding next year June 24th. I postponed it from this

year because there is no way I can physically do the planning.It has been very

hard because my dad is ill, and I can't spend time with him, nor do I know if he

will be okay for next year as he has colorectal cancer- stage 4. He is doing

okay for now, but still chemo.

Anyway.. long story :)But we would like to start a family right after the

wedding. My husband will be 32, it's time

>>

>> >

>>

>> >

>>

>> > Oh wow! That is very interesting. Now I don't know if I told you this

>> > but

>>

>> > Dr. Frim said no more epidurals for me. I have no space in my lower

>> > back,

>>

>> > only mid. I wonder how this will work when I have a child! O.O

>>

>> > I guess that would make total sense. Almost like in MS/cancer where

>> > they

>>

>> > try to reset the cells/neurons...

>>

>> > My major concern is having children in the next 2 years or so.

>> > Nevermind

>>

>> > this wedding we are planning for. I really need to get some answers

>> > ASAP.

>>

>> > I am just wondering how I bring all of this up to her and have this

>>

>> > addressed. I am sad we let it get this far. Have been spending a lot of

>>

>> > time in pain and feeling sorry for myself. More than when I was DX with

>> TC.I

>>

>> > would like to not lose my job etc. and get working on trying to fix

>> > this.

>> I

>>

>> > am up for anything at this point. If the ketamine had a 50% chance of

>>

>> > working I would take some vacation time LOL

>>

>> >

>>

>> >

>>

>> >

>>

>>

[Guest guest]

Hi Kathy

I agree - I feel better now than I have ever done with the TCS. The 5 year

marker was significant for me, as that was when I felt I had got over the

surgery and any improvements or recovery in movement/sensation were

complete. Since 2006 I have gone travelling, got new jobs, am being made

redundant from my main job, have retrained in English language teaching and

am planning on going travelling again as an English teacher. I also do more

keep fit, swimming, walking and weight training now that I have ever done

BUT I still have the symptoms of TCS, the bilaterally deformed feet, the

chronic pain, the CRPS swelling whenever it gets warm in the UK. The

symptoms of TCS never go away, but they can be lived with and coped with.

My priorities have changed, and I am aiming to achieve as much as I can

even though I have TCS and my walking can be limited on occasion. But I am

nearly 10 years post-op and things could not be better for me

, I can't believe your little boy is 7!! Where did the time go

Best wishes

Nina

Bristol. UK

--

>

>

>

>

> Now, I'm good. My symptoms from TCS have subsided. At 43, I am in better

> shape

> than I was at 31. To look at TCS as sentence to life in hell is offensive

> to

> those of us who live with the symptoms of this every day. Our lives have

> quality, every single one of us. The trick is shifting expectations to

> find the

> quality again once life changes. It drives me crazy when my mom

> apologizes to me

> for my problems. I'm not miserable. Even when I could barely walk 100

> yards, I

> wasn't living a bad life. It is what we make it, nothing more, nothing

> less.

>

>

>

> The above could not have been said better ! Love when you have

> time to participate!

>

> Kathy

>

>

[Guest guest]

I had two children with vaginal deliveries and no epidural.  That was before I

was symptomatic, although now that I look back some of the issues I had at the

time could certainly be related to neuro issues, but everything settled down

eventually. They're now 19 and almost 17 and neither appear to have any issues

related to sb or tcs.

>>

>> >

>>

>> >

>>

>> > Oh wow! That is very interesting. Now I don't know if I told you this

>> > but

>>

>> > Dr. Frim said no more epidurals for me. I have no space in my lower

>> > back,

>>

>> > only mid. I wonder how this will work when I have a child! O.O

>>

>> > I guess that would make total sense. Almost like in MS/cancer where

>> > they

>>

>> > try to reset the cells/neurons...

>>

>> > My major concern is having children in the next 2 years or so.

>> > Nevermind

>>

>> > this wedding we are planning for. I really need to get some answers

>> > ASAP.

>>

>> > I am just wondering how I bring all of this up to her and have this

>>

>> > addressed. I am sad we let it get this far. Have been spending a lot of

>>

>> > time in pain and feeling sorry for myself. More than when I was DX with

>> TC.I

>>

>> > would like to not lose my job etc. and get working on trying to fix

>> > this.

>> I

>>

>> > am up for anything at this point. If the ketamine had a 50% chance of

>>

>> > working I would take some vacation time LOL

>>

>> >

>>

>> >

>>

>> >

>>

>>

[Guest guest]

Ok, I give and I'm being nosy. Why, if you are married where a 'wedding' of

some sort took place (even if with a JOP), are you stressing and planning

another wedding?

Have you considered having a party and inviting all that you love and are close

to so you can celebrate your marriage? Seems it would take a lot of the stress

off of you and the cost would be minimal compared to a wedding.

Having gone through two weddings myself and paying for one for our oldest

daughter, I can tell you they're over-rated. I wish to God I had just gotten

married by a minister/priest in a very quiet, meaningful ceremony. Our daughter

would tell you the opposite because anything oppulent is her goal, but really

when it comes down to it - you're just as married as I am and I've been married

25 years - going on 26 and you will have much less cost.

Just an idea with all you have on your plate. Seems that it may need a rethink

if you are putting off a " wedding " to a two year point from when you actually

got married. This of course is coming from again from someone who wishes she

did it differently.

Kathy

Re: TC & Pregnancy -

I had two children with vaginal deliveries and no epidural. That was before I

was symptomatic, although now that I look back some of the issues I had at the

time could certainly be related to neuro issues, but everything settled down

eventually. They're now 19 and almost 17 and neither appear to have any issues

related to sb or tcs.

>>

>> >

>>

>> >

>>

>> > Oh wow! That is very interesting. Now I don't know if I told you this

>> > but

>>

>> > Dr. Frim said no more epidurals for me. I have no space in my lower

>> > back,

>>

>> > only mid. I wonder how this will work when I have a child! O.O

>>

>> > I guess that would make total sense. Almost like in MS/cancer where

>> > they

>>

>> > try to reset the cells/neurons...

>>

>> > My major concern is having children in the next 2 years or so.

>> > Nevermind

>>

>> > this wedding we are planning for. I really need to get some answers

>> > ASAP.

>>

>> > I am just wondering how I bring all of this up to her and have this

>>

>> > addressed. I am sad we let it get this far. Have been spending a lot of

>>

>> > time in pain and feeling sorry for myself. More than when I was DX with

>> TC.I

>>

>> > would like to not lose my job etc. and get working on trying to fix

>> > this.

>> I

>>

>> > am up for anything at this point. If the ketamine had a 50% chance of

>>

>> > working I would take some vacation time LOL

>>

>> >

>>

>> >

>>

>> >

>>

>>

[Guest guest]

We really cannot because of his family. Weddings are part of their " tradition "

and culture. So no, it's not an option.Trust me when I say that I could care

less at this point. I just picked up my dress and I could care less about that

too!

But we have to do it. No one knows we are married except my mom. And the medical

staff LOL 

>>

>> >

>>

>> >

>>

>> > Oh wow! That is very interesting. Now I don't know if I told you this

>> > but

>>

>> > Dr. Frim said no more epidurals for me. I have no space in my lower

>> > back,

>>

>> > only mid. I wonder how this will work when I have a child! O.O

>>

>> > I guess that would make total sense. Almost like in MS/cancer where

>> > they

>>

>> > try to reset the cells/neurons...

>>

>> > My major concern is having children in the next 2 years or so.

>> > Nevermind

>>

>> > this wedding we are planning for. I really need to get some answers

>> > ASAP.

>>

>> > I am just wondering how I bring all of this up to her and have this

>>

>> > addressed. I am sad we let it get this far. Have been spending a lot of

>>

>> > time in pain and feeling sorry for myself. More than when I was DX with

>> TC.I

>>

>> > would like to not lose my job etc. and get working on trying to fix

>> > this.

>> I

>>

>> > am up for anything at this point. If the ketamine had a 50% chance of

>>

>> > working I would take some vacation time LOL

>>

>> >

>>

>> >

>>

>> >

>>

>>

[Guest guest]

Oh! Wow - that's quite a secret to keep . I don't envy you - didn't

expect that response at all. Sorry you're in this position, but glad you were

able to put it off for a time.

Kathy

Re: TC & Pregnancy -

We really cannot because of his family. Weddings are part of their " tradition "

and culture. So no, it's not an option.Trust me when I say that I could care

less at this point. I just picked up my dress and I could care less about that

too!

But we have to do it. No one knows we are married except my mom. And the

medical staff LOL

>>

>> >

>>

>> >

>>

>> > Oh wow! That is very interesting. Now I don't know if I told you this

>> > but

>>

>> > Dr. Frim said no more epidurals for me. I have no space in my lower

>> > back,

>>

>> > only mid. I wonder how this will work when I have a child! O.O

>>

>> > I guess that would make total sense. Almost like in MS/cancer where

>> > they

>>

>> > try to reset the cells/neurons...

>>

>> > My major concern is having children in the next 2 years or so.

>> > Nevermind

>>

>> > this wedding we are planning for. I really need to get some answers

>> > ASAP.

>>

>> > I am just wondering how I bring all of this up to her and have this

>>

>> > addressed. I am sad we let it get this far. Have been spending a lot of

>>

>> > time in pain and feeling sorry for myself. More than when I was DX with

>> TC.I

>>

>> > would like to not lose my job etc. and get working on trying to fix

>> > this.

>> I

>>

>> > am up for anything at this point. If the ketamine had a 50% chance of

>>

>> > working I would take some vacation time LOL

>>

>> >

>>

>> >

>>

>> >

>>

>>

[Guest guest]

Sounds like many of us have had children prior to diagnosis. I would recommend,

however, to talk to your doctor and schedule a c-section at 38 weeks to avoid

" injurying " or straining your spinal cord during delievery. My boys were both

delievered via emergency c-sectios. Both times the anthesologist would not dare

give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >> > Oh wow! That is very interesting. Now I don't know if I told you this

>

> >> > but

>

> >>

>

> >> > Dr. Frim said no more epidurals for me. I have no space in my lower

>

> >> > back,

>

> >>

>

> >> > only mid. I wonder how this will work when I have a child! O.O

>

> >>

>

> >> > I guess that would make total sense. Almost like in MS/cancer where

>

> >> > they

>

> >>

>

> >> > try to reset the cells/neurons...

>

> >>

>

> >> > My major concern is having children in the next 2 years or so.

>

> >> > Nevermind

>

> >>

>

> >> > this wedding we are planning for. I really need to get some answers

>

> >> > ASAP.

>

> >>

>

> >> > I am just wondering how I bring all of this up to her and have this

>

> >>

>

> >> > addressed. I am sad we let it get this far. Have been spending a lot of

>

> >>

>

> >> > time in pain and feeling sorry for myself. More than when I was DX with

>

> >> TC.I

>

> >>

>

> >> > would like to not lose my job etc. and get working on trying to fix

>

> >> > this.

>

> >> I

>

> >>

>

> >> > am up for anything at this point. If the ketamine had a 50% chance of

>

> >>

>

> >> > working I would take some vacation time LOL

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >>

[Guest guest]

My c-section was performed with spinal anesthesia (think that's what they called

it). The guy wouldn't touch the epidural space, but put it in the intrathecal

space (again, I think that was what he called it). Worked like a charm. Some

docs won't get near a spine like mine. This doc was a booger about it. I wanted

general, afraid to death of what could happen if he touched my back. and he

pushed and pushed until I let him try the spinal. He was really excellent and

I'm glad I got to be awake for the c-section.

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 9:37:59 PM

Subject: Re: TC & Pregnancy -

Sounds like many of us have had children prior to diagnosis. I would recommend,

however, to talk to your doctor and schedule a c-section at 38 weeks to avoid

" injurying " or straining your spinal cord during delievery. My boys were both

delievered via emergency c-sectios. Both times the anthesologist would not dare

give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >> > Oh wow! That is very interesting. Now I don't know if I told you this

>

> >> > but

>

> >>

>

> >> > Dr. Frim said no more epidurals for me. I have no space in my lower

>

> >> > back,

>

> >>

>

> >> > only mid. I wonder how this will work when I have a child! O.O

>

> >>

>

> >> > I guess that would make total sense. Almost like in MS/cancer where

>

> >> > they

>

> >>

>

> >> > try to reset the cells/neurons...

>

> >>

>

> >> > My major concern is having children in the next 2 years or so.

>

> >> > Nevermind

>

> >>

>

> >> > this wedding we are planning for. I really need to get some answers

>

> >> > ASAP.

>

> >>

>

> >> > I am just wondering how I bring all of this up to her and have this

>

> >>

>

> >> > addressed. I am sad we let it get this far. Have been spending a lot of

>

> >>

>

> >> > time in pain and feeling sorry for myself. More than when I was DX with

>

> >> TC.I

>

> >>

>

> >> > would like to not lose my job etc. and get working on trying to fix

>

> >> > this.

>

> >> I

>

> >>

>

> >> > am up for anything at this point. If the ketamine had a 50% chance of

>

> >>

>

> >> > working I would take some vacation time LOL

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >> >

>

> >>

>

> >>

[Guest guest]

, I don't blame you for wanting to have a baby. It is the most amazing

thing to ever happen to me 4 times. My first born has the tsc. I knew there

was an increased risk of subsequent children having the condition, but since it

was a small chance we went forward with our big family. I've had desires to

adopt as well, but since we have a full home of our birth children I doubt we

will ever be in a position to adopt. However I'm sure it is just as a fulfilling

experience! Anyway, if you get the thumbs up from neuro, I would recommend

consulting with a midwife about your options too . A good midwife is

very knowledgeable and may have ideas about how to prevent complications with

your spinal cord during pregnancy and delivery. Good luck to you in whatever

the future holds concerning this!

Holly

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 1:53:26 PM

Subject: Re: TC & Pregnancy -

Thank you Holly. Our plan was 1 or 2 of our own and an adoption.Looks like

one naturally now and adoption! (if the docs agree)

I didn't realize TC would be such a huge obstacle in this!

>

>

> Oh wow! That is very interesting. Now I don't know if I told you this but

> Dr. Frim said no more epidurals for me. I have no space in my lower back,

> only mid. I wonder how this will work when I have a child! O.O

> I guess that would make total sense. Almost like in MS/cancer where they

> try to reset the cells/neurons...

> My major concern is having children in the next 2 years or so. Nevermind

> this wedding we are planning for. I really need to get some answers ASAP.

> I am just wondering how I bring all of this up to her and have this

> addressed. I am sad we let it get this far. Have been spending a lot of

> time in pain and feeling sorry for myself. More than when I was DX with TC.I

> would like to not lose my job etc. and get working on trying to fix this. I

> am up for anything at this point. If the ketamine had a 50% chance of

> working I would take some vacation time LOL

>

>

>

[Guest guest]

Exactly what she said is what ya do! It's the safest way for tsp ninnies to

deliver. Also if your at a good hospital like I was they have physical

therapists come the next day and the following four till I went home who helped

me outa bed tips tricks heating packs light massage to legs stimulate the legs

when I was into much pain to walk laps anymore lol. So much fun they had me put

the baby in the bassinet on wheels and use it as my walker. Them the ob floor

was a big circle with chairs in hall and you followed the foot prints on floor

rested as needed and pushed baby on her first stroller ride if you will. Got me

moving and my spine and they also helped with teaching tricks for cars chairs

shower my tub had a big wall to get over. Get help don't hesitate to ask your

drs for one!

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Sounds like many of us have had children prior to diagnosis. I would

recommend, however, to talk to your doctor and schedule a c-section at 38 weeks

to avoid " injurying " or straining your spinal cord during delievery. My boys

were both delievered via emergency c-sectios. Both times the anthesologist would

not dare give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

>

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> > Oh wow! That is very interesting. Now I don't know if I told you this

> >

> > >> > but

> >

> > >>

> >

> > >> > Dr. Frim said no more epidurals for me. I have no space in my lower

> >

> > >> > back,

> >

> > >>

> >

> > >> > only mid. I wonder how this will work when I have a child! O.O

> >

> > >>

> >

> > >> > I guess that would make total sense. Almost like in MS/cancer where

> >

> > >> > they

> >

> > >>

> >

> > >> > try to reset the cells/neurons...

> >

> > >>

> >

> > >> > My major concern is having children in the next 2 years or so.

> >

> > >> > Nevermind

> >

> > >>

> >

> > >> > this wedding we are planning for. I really need to get some answers

> >

> > >> > ASAP.

> >

> > >>

> >

> > >> > I am just wondering how I bring all of this up to her and have this

> >

> > >>

> >

> > >> > addressed. I am sad we let it get this far. Have been spending a lot of

> >

> > >>

> >

> > >> > time in pain and feeling sorry for myself. More than when I was DX with

> >

> > >> TC.I

> >

> > >>

> >

> > >> > would like to not lose my job etc. and get working on trying to fix

> >

> > >> > this.

> >

> > >> I

> >

> > >>

> >

> > >> > am up for anything at this point. If the ketamine had a 50% chance of

> >

> > >>

> >

> > >> > working I would take some vacation time LOL

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >>

[Guest guest]

One more think. I know somewhere there is an article published in a medical

journal on why tsc women should do vaginal delivers. It has something to with

pushing and if you've had your surgery prior to the pregnancy pushing during

labor can cause injury paralysis or respiratory failure. My neuro used it to

explain to my ob why I was a special case and how to treat me! But anyone

thinking of getting pregnant go for it! Do your research plan as far ahead as

you can. Take your vitamins and supplements early. Get tour blood levels checked

often when your folic and others b12 etc are higher then normal go for it and

keep it high once your out if first timester then it's just worrying about pre

natal and iron! Cause if the tsc is going to happen it happens then. Then sit

back and try to stay happy and healthy. And once you start to feel big and some

if like me feel the pulling of the cord you might be put on bed rest it modified

bed rest but you 9-10 cam do this! And trust me the sedated csection isn't what

it was years ago. I went under at 425 Emma was pulled at at 429 my husband was

standing at door and held her and brought her out to family at 436! And she was

born at 34 weeks she tried several times to come out sooner lol but finally at

34 weeks she was Breech and my slippery minx got her foot past my cervix and I

had no choice but to take her out that day! So funny story. I had horrible

pregnancy with morning sickness. Pic line Ivs at home pumps for nausea meds the

works lol. 34 week check up I'm feeling great get all dressed up going to dr

then had lunch date with friends last min shopping. Get to office dr does exam

cause I had been 2-3 for weeks and goes oh shit that doesn't feel right. Goes

come on over to ultrasound. Does ultrasound. Missing lots of fluid! Apparently

water had broke never new it and she somehow managed to get her foot passed my

cervix! I got dressed went over to hospital. My family made it there in nick of

time kissed everyone went in got iv woke up 20 min later and they put her in my

arms. Kissed her million times. Cried loved her kicked everyone out and sent

hubby home too lol and sent baby to the nursery and went to bed! Woke up next

morning to a physical therapist and my neuro he checked me out they got me up

and moving and started my exercises. Spent four days there then went home!

Biggest issue I had. It hurt to fart in my csection stich area and my tsc area

lol! But she's the best thing ever and I truly believe if it wasn't for my neuro

and my ob working so close hand in hand that it wouldn't have been such a great

pregnancy with minimal pain as it was. And thanks to there careful monitoring

she was born addiction free!

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Sounds like many of us have had children prior to diagnosis. I would

recommend, however, to talk to your doctor and schedule a c-section at 38 weeks

to avoid " injurying " or straining your spinal cord during delievery. My boys

were both delievered via emergency c-sectios. Both times the anthesologist would

not dare give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

>

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> > Oh wow! That is very interesting. Now I don't know if I told you this

> >

> > >> > but

> >

> > >>

> >

> > >> > Dr. Frim said no more epidurals for me. I have no space in my lower

> >

> > >> > back,

> >

> > >>

> >

> > >> > only mid. I wonder how this will work when I have a child! O.O

> >

> > >>

> >

> > >> > I guess that would make total sense. Almost like in MS/cancer where

> >

> > >> > they

> >

> > >>

> >

> > >> > try to reset the cells/neurons...

> >

> > >>

> >

> > >> > My major concern is having children in the next 2 years or so.

> >

> > >> > Nevermind

> >

> > >>

> >

> > >> > this wedding we are planning for. I really need to get some answers

> >

> > >> > ASAP.

> >

> > >>

> >

> > >> > I am just wondering how I bring all of this up to her and have this

> >

> > >>

> >

> > >> > addressed. I am sad we let it get this far. Have been spending a lot of

> >

> > >>

> >

> > >> > time in pain and feeling sorry for myself. More than when I was DX with

> >

> > >> TC.I

> >

> > >>

> >

> > >> > would like to not lose my job etc. and get working on trying to fix

> >

> > >> > this.

> >

> > >> I

> >

> > >>

> >

> > >> > am up for anything at this point. If the ketamine had a 50% chance of

> >

> > >>

> >

> > >> > working I would take some vacation time LOL

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >>

[Guest guest]

This is great! I really appreciate the feedback. I am a bit stunned BUT I feel

that it's better to be prepared.I shared this with my husband last night.PS: I

was told I can't have an epidural because there is no space in the lower back,

per Dr. Frim. Is that unusual? 

> Sounds like many of us have had children prior to diagnosis. I would

recommend, however, to talk to your doctor and schedule a c-section at 38 weeks

to avoid " injurying " or straining your spinal cord during delievery. My boys

were both delievered via emergency c-sectios. Both times the anthesologist would

not dare give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

>

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> > Oh wow! That is very interesting. Now I don't know if I told you this

> >

> > >> > but

> >

> > >>

> >

> > >> > Dr. Frim said no more epidurals for me. I have no space in my lower

> >

> > >> > back,

> >

> > >>

> >

> > >> > only mid. I wonder how this will work when I have a child! O.O

> >

> > >>

> >

> > >> > I guess that would make total sense. Almost like in MS/cancer where

> >

> > >> > they

> >

> > >>

> >

> > >> > try to reset the cells/neurons...

> >

> > >>

> >

> > >> > My major concern is having children in the next 2 years or so.

> >

> > >> > Nevermind

> >

> > >>

> >

> > >> > this wedding we are planning for. I really need to get some answers

> >

> > >> > ASAP.

> >

> > >>

> >

> > >> > I am just wondering how I bring all of this up to her and have this

> >

> > >>

> >

> > >> > addressed. I am sad we let it get this far. Have been spending a lot of

> >

> > >>

> >

> > >> > time in pain and feeling sorry for myself. More than when I was DX with

> >

> > >> TC.I

> >

> > >>

> >

> > >> > would like to not lose my job etc. and get working on trying to fix

> >

> > >> > this.

> >

> > >> I

> >

> > >>

> >

> > >> > am up for anything at this point. If the ketamine had a 50% chance of

> >

> > >>

> >

> > >> > working I would take some vacation time LOL

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >> >

> >

> > >>

> >

> > >>

[Guest guest]

No not really if you've had tsc before most women can't have epidurals for that

if they pierce wrong place with needle you are either paralysed or can go into

respiratory failure the medicine does in your dural sac when you have had

surgery like we have your sac is compromised. So if they mess it up the outcome

isn't good. Some dr chance it. But your seems wise like mine and let you know

ahead a time. Besides a few meds and rest here and there youll have a totally

normal pregnancy hopefully! And all spina bifida tsc worries of baby being born

with it. If it doesn't happen during first trimester then it won't happen! Plus

with 3d ultrasound they can sometimes show you baby's spine they did for me! She

was long but straight no bumbs or holes made me happy. Even though I have my

suspions now lol.

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> This is great! I really appreciate the feedback. I am a bit stunned BUT I feel

that it's better to be prepared.I shared this with my husband last night.PS: I

was told I can't have an epidural because there is no space in the lower back,

per Dr. Frim. Is that unusual?

>

>

>

>

>

> > Sounds like many of us have had children prior to diagnosis. I would

recommend, however, to talk to your doctor and schedule a c-section at 38 weeks

to avoid " injurying " or straining your spinal cord during delievery. My boys

were both delievered via emergency c-sectios. Both times the anthesologist would

not dare give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

> >

>

> >

>

> > >

>

> > > >>

>

> > >

>

> > > >> >

>

> > >

>

> > > >>

>

> > >

>

> > > >> >

>

> > >

>

> > > >>

>

> > >

>

> > > >> > Oh wow! That is very interesting. Now I don't know if I told you this

>

> > >

>

> > > >> > but

>

> > >

>

> > > >>

>

> > >

>

> > > >> > Dr. Frim said no more epidurals for me. I have no space in my lower

>

> > >

>

> > > >> > back,

>

> > >

>

> > > >>

>

> > >

>

> > > >> > only mid. I wonder how this will work when I have a child! O.O

>

> > >

>

> > > >>

>

> > >

>

> > > >> > I guess that would make total sense. Almost like in MS/cancer where

>

> > >

>

> > > >> > they

>

> > >

>

> > > >>

>

> > >

>

> > > >> > try to reset the cells/neurons...

>

> > >

>

> > > >>

>

> > >

>

> > > >> > My major concern is having children in the next 2 years or so.

>

> > >

>

> > > >> > Nevermind

>

> > >

>

> > > >>

>

> > >

>

> > > >> > this wedding we are planning for. I really need to get some answers

>

> > >

>

> > > >> > ASAP.

>

> > >

>

> > > >>

>

> > >

>

> > > >> > I am just wondering how I bring all of this up to her and have this

>

> > >

>

> > > >>

>

> > >

>

> > > >> > addressed. I am sad we let it get this far. Have been spending a lot

of

>

> > >

>

> > > >>

>

> > >

>

> > > >> > time in pain and feeling sorry for myself. More than when I was DX

with

>

> > >

>

> > > >> TC.I

>

> > >

>

> > > >>

>

> > >

>

> > > >> > would like to not lose my job etc. and get working on trying to fix

>

> > >

>

> > > >> > this.

>

> > >

>

> > > >> I

>

> > >

>

> > > >>

>

> > >

>

> > > >> > am up for anything at this point. If the ketamine had a 50% chance of

>

> > >

>

> > > >>

>

> > >

>

> > > >> > working I would take some vacation time LOL

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[Guest guest]

Ha! I can't believe she got her foot out! That is a cute story.I'm so happy

you did so well and have a healthy, beautiful baby. 

> Sounds like many of us have had children prior to diagnosis. I would

recommend, however, to talk to your doctor and schedule a c-section at 38 weeks

to avoid " injurying " or straining your spinal cord during delievery. My boys

were both delievered via emergency c-sectios. Both times the anthesologist would

not dare give me an epidural when he saw that lump on my spine. Both babies were

delivered under general anthesia. It is considered high risk but completely

worth having healthy boys!

>

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> > >> > Oh wow! That is very interesting. Now I don't know if I told you this

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> > >> > but

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> > >> > Dr. Frim said no more epidurals for me. I have no space in my lower

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> > >> > back,

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> > >> > only mid. I wonder how this will work when I have a child! O.O

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> > >> > I guess that would make total sense. Almost like in MS/cancer where

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> > >> > they

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> > >> > try to reset the cells/neurons...

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> > >> > My major concern is having children in the next 2 years or so.

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> > >> > Nevermind

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> > >> > this wedding we are planning for. I really need to get some answers

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> > >> > ASAP.

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> > >> > I am just wondering how I bring all of this up to her and have this

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> > >> > addressed. I am sad we let it get this far. Have been spending a lot of

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> > >> > time in pain and feeling sorry for myself. More than when I was DX with

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> > >> TC.I

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> > >> > would like to not lose my job etc. and get working on trying to fix

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> > >> > this.

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> > >> I

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> > >> > am up for anything at this point. If the ketamine had a 50% chance of

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> > >> > working I would take some vacation time LOL

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