Re: Pregnency post tethered spinal cord

[Guest guest]

My daughter is 19 now and I am eager to hear the responses that you get.

Certainly, you can find a NSG now to continue to follow you both through

your pregnancy and beyond. It can't hurt to have someone you know you can

call upon..same with a urologist. that might be the easiest place to start.

Please let us know what you discover and I hope others have experience to

share with you. blessings to your baby!!

In a message dated 1/14/2010 6:57:06 P.M. Central Standard Time,

gurltwitches@... writes:

I was diagnosed with tethered spinal cord when I was nine years old. The

doctors didn't give me alot of the details since I was so young, but they

moved along quickly to get me into MRIs and surgery. It's been 13 years since

the surgery with little problems. I kept going to the doctor for check ups

for a few years after but kind of just quit by time I made it to my teen

years. I haven't been back in quite some time, like ten years. Anyways, I'm

15 weeks pregnant now and my tailbone hurts alot. I'm also experiences some

difficulty passing urine. I have to push really hard and feel like have to

go alot. Sometimes I leak a little. I can't help but get paranoid that my

spine has re-tethered. I'm looking to talk to someone whose had this

experience or whose been pregnant with TSCS or who had it before pregnancy.

[Guest guest]

Well, I was tethered when I had my two pregnancies so I really dont know what is

" normal " lol but seems like perhaps the baby's position might impede your

ability to go sometimes and it is certainly normal to pee alot and to leak occas

(I think) although that might be further along really. Wouldnt hurt to get it

checked out for sure. As for the tailbone..well ligaments are stretching and

accomodating a growing baby and everything is connected down there so it might

just all be normal stuff. Lets hope so

Subject: Re: Pregnency post tethered spinal cord

To: tetheredspinalcord

Date: Thursday, January 14, 2010, 7:05 PM

 

My daughter is 19 now and I am eager to hear the responses that you get.

Certainly, you can find a NSG now to continue to follow you both through

your pregnancy and beyond. It can't hurt to have someone you know you can

call upon..same with a urologist. that might be the easiest place to start.

Please let us know what you discover and I hope others have experience to

share with you. blessings to your baby!!

In a message dated 1/14/2010 6:57:06 P.M. Central Standard Time,

gurltwitches@ yahoo.com writes:

I was diagnosed with tethered spinal cord when I was nine years old. The

doctors didn't give me alot of the details since I was so young, but they

moved along quickly to get me into MRIs and surgery. It's been 13 years since

the surgery with little problems. I kept going to the doctor for check ups

for a few years after but kind of just quit by time I made it to my teen

years. I haven't been back in quite some time, like ten years. Anyways, I'm

15 weeks pregnant now and my tailbone hurts alot. I'm also experiences some

difficulty passing urine. I have to push really hard and feel like have to

go alot. Sometimes I leak a little. I can't help but get paranoid that my

spine has re-tethered. I'm looking to talk to someone whose had this

experience or whose been pregnant with TSCS or who had it before pregnancy.

[Guest guest]

I had tethered cord and delivered twins, so absolutely doable. One of

the noticeable problems I had was during the middle of the pregnancy

when the hormones that relaxed the pelvis in preparation of birth made

walking more painful and awkward. I used a wheelchair very briefly,

but again, I was carrying twins and only 5'4 " .

Delivery was natural and vaginal however I did NOT feel early labor at

all. I didn't notice anything until I was past 5 cm. and I have heard

others say the same thing. Not really sure why this is so, but be

warned and of course use a high-risk ob-gyn.

Only other oddity was babies really never dropped and you may have an

extended 2nd stage labor. This was a problem with all the children I

had, trying to push them past the mess in my back :-) But, I did have

5, none with tethered cord but 4 so far with very mild Chiari.

M.

PS: Careful with the spinal anesthesia... I had relief only on one side.

> I was diagnosed with tethered spinal cord when I was nine years old. The

doctors didn't give me alot of the details since I was so young, but they moved

along quickly to get me into MRIs and surgery. It's been 13 years since the

surgery with little problems. I kept going to the doctor for check ups for a few

years after but kind of just quit by time I made it to my teen years. I haven't

been back in quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

and my tailbone hurts alot. I'm also experiences some difficulty passing urine.

I have to push really hard and feel like have to go alot. Sometimes I leak a

little. I can't help but get paranoid that my spine has re-tethered. I'm looking

to talk to someone whose had this experience or whose been pregnant with TSCS or

who had it before pregnancy.

>

>

>

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

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: darlene_self@... or

> : hollygolightly1916@...

>                                                          

[Guest guest]

I had the first three of my children vaginally. After the first child, I found

out I had tethered cord when my legs went numb and my feet clawed. Had the

surgery, then had two more children. By the time I had my second surgery, I lost

all bladder function and have almost constant pain in my legs. When I got

pregnant with baby number 4, my OB required me to see my neurologist, who told

me that there is no way I should be having babies vaginally. My symptoms started

and then got worse after each birth. I had a c-section with number four and had

no loss of function afterward.

If you have bladder issues due to TCS, you should consider seeing a neurologist.

At 15 weeks, the baby shouldn't be pushing on your bladder that much and it will

get way worse by the time you're full term. I never had any pain with my

pregnancies, so I'm not sure what the tailbone pain might be, but again, if you

can, see a neurologist and let them figure it out. Being pregnant and giving

birth causes a lot of strain on your spine.

On Thu, Jan 14, 2010 at 6:56 PM, gurltwitches <gurltwitches@ yahoo.com> wrote:

> I was diagnosed with tethered spinal cord when I was nine years old. The

doctors didn't give me alot of the details since I was so young, but they moved

along quickly to get me into MRIs and surgery. It's been 13 years since the

surgery with little problems. I kept going to the doctor for check ups for a few

years after but kind of just quit by time I made it to my teen years. I haven't

been back in quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

and my tailbone hurts alot. I'm also experiences some difficulty passing urine.

I have to push really hard and feel like have to go alot. Sometimes I leak a

little. I can't help but get paranoid that my spine has re-tethered. I'm looking

to talk to someone whose had this experience or whose been pregnant with TSCS or

who had it before pregnancy.

>

>

>

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

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: darlene_self@ yahoo.ca or

> : hollygolightly1916@ yahoo.com

>

[Guest guest]

I agree with . By 15 weeks, the baby shouldn't be big enough to be

causing major bladder problems. I think that since you are beginning to

experience neurological problems it is important for you to see a

neurologist as well as a high risk OB (both for you and your baby as

researchers believe there is a genetic component to NTDs). From what I have

read, pregnancy can cause increased pain and symptoms in those with NTD;

however, the biggest risk comes in delivery. The lithotomy position is

particularly bad for those with TC, as well as the straining. If you opt for

an epidural, that can also cause problems and should be done by an

anesthesiologist who has experience placing them in people with SCI/D. They

should not go in blind, meaning, they should be very familiar with any

spinal and/or cord anamolies that you have so they can be sure to place it

correctly. One big issue with the epidural is that in people with TC, the

cord generally ends lower than it should. I believe the normal placement for

an epidural is below the area where a normal person's cord would end. But,

in a person with TC, if the cord ends lower than normal, the

anesthesiologist needs to be aware of where your cord ends so as not to

strike it during epidural placement. Most women with TC who experience

neurological decline with pregnancy are like , and experience it

after delivery.

I would be safe and consult both a neurologist and high risk OB who has

experience delivering babies in people with SCI/D.

Best of luck to you and here's to a happy and healthy baby!

Jenn

>

>

> I had the first three of my children vaginally. After the first child, I

> found out I had tethered cord when my legs went numb and my feet clawed. Had

> the surgery, then had two more children. By the time I had my second

> surgery, I lost all bladder function and have almost constant pain in my

> legs. When I got pregnant with baby number 4, my OB required me to see my

> neurologist, who told me that there is no way I should be having babies

> vaginally. My symptoms started and then got worse after each birth. I had a

> c-section with number four and had no loss of function afterward.

>

> If you have bladder issues due to TCS, you should consider seeing a

> neurologist. At 15 weeks, the baby shouldn't be pushing on your bladder that

> much and it will get way worse by the time you're full term. I never had any

> pain with my pregnancies, so I'm not sure what the tailbone pain might be,

> but again, if you can, see a neurologist and let them figure it out. Being

> pregnant and giving birth causes a lot of strain on your spine.

>

>

>

>

> On Thu, Jan 14, 2010 at 6:56 PM, gurltwitches <gurltwitches@ yahoo.com>

> wrote:

> > I was diagnosed with tethered spinal cord when I was nine years old. The

> doctors didn't give me alot of the details since I was so young, but they

> moved along quickly to get me into MRIs and surgery. It's been 13 years

> since the surgery with little problems. I kept going to the doctor for check

> ups for a few years after but kind of just quit by time I made it to my teen

> years. I haven't been back in quite some time, like ten years. Anyways, I'm

> 15 weeks pregnant now and my tailbone hurts alot. I'm also experiences some

> difficulty passing urine. I have to push really hard and feel like have to

> go alot. Sometimes I leak a little. I can't help but get paranoid that my

> spine has re-tethered. I'm looking to talk to someone whose had this

> experience or whose been pregnant with TSCS or who had it before pregnancy.

> >

> >

> >

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

>

> >

> > NOT MEDICAL ADVICE. We Are Not Doctors.

> > Need help with list?Email Darlene: darlene_self@ yahoo.ca or

> > : hollygolightly1916@ yahoo.com

> >

[Guest guest]

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192@...

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches "

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

It was a great question and not a bit of it sounded stupid!! I am

interested too if you have to wait some time period before breast feeding if you

have a general. An OB and our daughter's neurosurgeon said that she should

have a C section. PS I adopted and once you get that baby in your arms,

you won't care AT ALL how it got there!! Enjoy the pregnancy and

parenthood!!! And keep asking questions!! I don't remember what they said

about the

epidural though I know we asked. Randee

In a message dated 1/16/2010 12:53:58 P.M. Central Standard Time,

gurltwitches@... writes:

thank you all. i'm not trying to start any debates or arguments by any

means.

i go to my regular ob on tuesday. i was already high risk due to previous

miscarriages so he's a high risk doctor. i plan to talk to him about

getting a neurosurgeon and my back. delivery is still quite a ways away. just

trying to know what's going on now. i didn't think this would be a big deal.

it hasn't affected me since i had the surgery. now, any symptoms i have, i

never know if they're pregnancy or TSC. i didn't even really know what TSC

was until i researched it in the last few years. i was a child when i dealt

with this.

the reason i said " knocked out " was because i didn't know if they would

want to do a spinal on me if they thought my back was problem to begin with.

also, the reason i said something about breast-feeding was because i

didn'didn'<WBR>t know how my going under would af anesthesia and all. this is

my

first child. i've never delivered before so some of my questions might

sound stupid.

________________________________

From: DK Moulton <_kmoulton@..._ (mailto:kmoulton@...) >

To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

Sent: Sat, January 16, 2010 12:20:23 PM

Subject: Re: Pregnency post tethered spinal cord

Stacie,

First, , I'm confused why you say that she is not retethered - did

she say that in a previous post? (Have not been able to keep up with the

messages from the list.)

Also - why must she have a c-section? I had four children, all vaginally.

It wasn't until I fell down my cellar stairs, four years after my fourth

child was born that symptoms from the undiagnosed Lipomeningocele were such

that I required medical attention which eventually (almost four/five years

after the fall) led to the diagnose of LMC/Chiari. If she is not retethered,

then what do you see as the medical risks to the degree that you state she

must have a c-section without medical advise of such? I think I've missed

something by not keeping up with this thread ...

Stacie - Why don't you speak with a neurosurgeon that has experience with

pregnancy and tethered cord. Ask what damage, if any, you risk by having a

delivery vaginally compared to c-section. Talk to a high-risk pregancy OB

and ask the same questions. If you are not retethered, then I don't

understand why someone without an OB beside their name would insist on telling

you

to have a c-section. They may be correct, but you really need that advise

from a doctor that can examine you, review your medical records, and perform

any tests that are necessary (if any are needed) to assess your condition

(previous tether and surgery).

What do your breasts have to do with a tethered cord? I'm not being wise,

but don't see the association of breast feeding and a tethered cord. Would

you elaborate a bit? I breast fed three of our children for months and for

a short period of time with our last child. Absolutely no problems.

Labor with our fourth child was all in my back. Lots of people have back

labor with no known back problems though. I was told I had back labor

because of the position of my uterus - it was tilted at that point. I can't say

if back labor was better or worse than " normal " abdomen labor - just

different.

I know a lot of people that have had C-sections and I can't think of one

person that was " knocked out " . All were awake with and got to see their baby

right after delivery. From a personal standpoint and my own personal

opinion, if I had been given the option of pushing a small watermelon through

an

opening that is nothing even close to that size, I would have chosen a

c-section. To me, the only upsides to having a vaginal delivery vs. c-section

(beyond the obvious of surgery vs. no surgery) is that I was able to get up

and walk around after delivery and I did not have the recuperation of a

c-section.

As far as a needle going into your back during labor (to Stacie); I just

had a myleogram (sp) last month - I was petrified of the needle hitting

nerves from the cord. My cord does not terminate where it should and without

access to previous MRI's to help guide the neuro-radiologist, it was even

scarier.

They were able to place the needle into my back through lots of scar

tissue though. However, they were very careful. They first attempted to go in

very low in my back, but not only were they not able to get through the scar

tissue safely, the pain that the needle caused was incredible - signaling

to them that they were going into an area where the nerves/spinal cord was

being affected. They called in the head of neuro-radiology and she went in

higher in my back and all went fine. It barely hurt when she put the needle

in (afterward was a different story and it did hurt when she put it in

initially, but she was quick so was the pain from the needle).

I do hope you will seek out a doctor that is versed with previous tethered

cords and pregnancies/ deliveries of babies.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me

ltbunny192aol (DOT) com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Why do I have to have a C-Section? I was really hoping to give birth naturally

and vaginally. I was already against getting an epidural because I have this big

scar back there that I didn't want them messing with, but I'm a little scared to

have a C-Section. Will they just knock me out? Could I still breast feed? I hate

going under. I'm going to miss the whole experience of actually having my baby,

aren't I?

Just out of curiousity, are any of your periods very painful and in your back?

I always figured mine were because of my back. 

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Sat, January 16, 2010 4:48:36 AM

Subject: Re: Pregnency post tethered spinal cord

 

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT) com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

I discussed the reason for c-section in my previous email. The

lithotomy position and straining are bad for people with TC. Many

women Dx with TC (or who don't know they have it) experience

neorological decline after vaginal delivery. It was either ,

or Kathy who said it happened to them. Without an epidural, u

would have to have general. You could deliver vaginally, but it would

be a risk of neuro decline.

Hopefully others who have been through it can give more insight and

firsthand experiences.

Jenn

Sent from my iPhone

> Why do I have to have a C-Section? I was really hoping to give birth

> naturally and vaginally. I was already against getting an epidural

> because I have this big scar back there that I didn't want them

> messing with, but I'm a little scared to have a C-Section. Will they

> just knock me out? Could I still breast feed? I hate going under.

> I'm going to miss the whole experience of actually having my baby,

> aren't I?

>

> Just out of curiousity, are any of your periods very painful and in

> your back? I always figured mine were because of my back.

>

> ________________________________

>

> To: " tetheredspinalcord " <tetheredspinalcord

> >

> Sent: Sat, January 16, 2010 4:48:36 AM

> Subject: Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

I never did have kids but knowing the risks I would definately opt for a

c-section. You may miss the delivery but to me it is not worth risking more

injury, possibly making it difficult to care for your child. My neighbour who

has chronic back pain (not TC) has a 6 month old at home and has to have her dad

come in and help her every day while her husband is at work. Seeing someone in

this position makes me recommend going for the lowest risk delivery possible.

As Jenn mentioned, there are many people who didn't even know they had TC have

major problems start after delivering a child. You are in a fortunate position

that you know you have this condition and can make educated decisions.

Good luck!

Dee

To: tetheredspinalcord

From: jlbobin@...

Date: Sat, 16 Jan 2010 13:05:25 -0500

Subject: Re: Pregnency post tethered spinal cord

I discussed the reason for c-section in my previous email. The

lithotomy position and straining are bad for people with TC. Many

women Dx with TC (or who don't know they have it) experience

neorological decline after vaginal delivery. It was either ,

or Kathy who said it happened to them. Without an epidural, u

would have to have general. You could deliver vaginally, but it would

be a risk of neuro decline.

Hopefully others who have been through it can give more insight and

firsthand experiences.

Jenn

Sent from my iPhone

> Why do I have to have a C-Section? I was really hoping to give birth

> naturally and vaginally. I was already against getting an epidural

> because I have this big scar back there that I didn't want them

> messing with, but I'm a little scared to have a C-Section. Will they

> just knock me out? Could I still breast feed? I hate going under.

> I'm going to miss the whole experience of actually having my baby,

> aren't I?

>

> Just out of curiousity, are any of your periods very painful and in

> your back? I always figured mine were because of my back.

>

> ________________________________

>

> To: " tetheredspinalcord " <tetheredspinalcord

> >

> Sent: Sat, January 16, 2010 4:48:36 AM

> Subject: Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

i know. i remember reading it. i guess i'm just bummed. Even if it hasn't

retethered, will I still need too?

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Sat, January 16, 2010 12:05:25 PM

Subject: Re: Pregnency post tethered spinal cord

 

I discussed the reason for c-section in my previous email. The

lithotomy position and straining are bad for people with TC. Many

women Dx with TC (or who don't know they have it) experience

neorological decline after vaginal delivery. It was either ,

or Kathy who said it happened to them. Without an epidural, u

would have to have general. You could deliver vaginally, but it would

be a risk of neuro decline.

Hopefully others who have been through it can give more insight and

firsthand experiences.

Jenn

Sent from my iPhone

On Jan 16, 2010, at 12:40, Stacie Harper <gurltwitches@ yahoo.com> wrote:

> Why do I have to have a C-Section? I was really hoping to give birth

> naturally and vaginally. I was already against getting an epidural

> because I have this big scar back there that I didn't want them

> messing with, but I'm a little scared to have a C-Section. Will they

> just knock me out? Could I still breast feed? I hate going under.

> I'm going to miss the whole experience of actually having my baby,

> aren't I?

>

> Just out of curiousity, are any of your periods very painful and in

> your back? I always figured mine were because of my back.

>

> ____________ _________ _________ __

> From: <ltbunny192aol (DOT) com>

> To: " tetheredspinalcord@ yahoogroups. com " <tetheredspinalcord@ yahoogroups.

com

> >

> Sent: Sat, January 16, 2010 4:48:36 AM

> Subject: Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

Stacie,

First, , I'm confused why you say that she is not retethered - did she

say that in a previous post? (Have not been able to keep up with the messages

from the list.)

Also - why must she have a c-section? I had four children, all vaginally. It

wasn't until I fell down my cellar stairs, four years after my fourth child was

born that symptoms from the undiagnosed Lipomeningocele were such that I

required medical attention which eventually (almost four/five years after the

fall) led to the diagnose of LMC/Chiari. If she is not retethered, then what do

you see as the medical risks to the degree that you state she must have a

c-section without medical advise of such? I think I've missed something by not

keeping up with this thread ...

Stacie - Why don't you speak with a neurosurgeon that has experience with

pregnancy and tethered cord. Ask what damage, if any, you risk by having a

delivery vaginally compared to c-section. Talk to a high-risk pregancy OB and

ask the same questions. If you are not retethered, then I don't understand why

someone without an OB beside their name would insist on telling you to have a

c-section. They may be correct, but you really need that advise from a doctor

that can examine you, review your medical records, and perform any tests that

are necessary (if any are needed) to assess your condition (previous tether and

surgery).

What do your breasts have to do with a tethered cord? I'm not being wise, but

don't see the association of breast feeding and a tethered cord. Would you

elaborate a bit? I breast fed three of our children for months and for a short

period of time with our last child. Absolutely no problems.

Labor with our fourth child was all in my back. Lots of people have back labor

with no known back problems though. I was told I had back labor because of the

position of my uterus - it was tilted at that point. I can't say if back labor

was better or worse than " normal " abdomen labor - just different.

I know a lot of people that have had C-sections and I can't think of one person

that was " knocked out " . All were awake with and got to see their baby right

after delivery. From a personal standpoint and my own personal opinion, if I

had been given the option of pushing a small watermelon through an opening that

is nothing even close to that size, I would have chosen a c-section. To me, the

only upsides to having a vaginal delivery vs. c-section (beyond the obvious of

surgery vs. no surgery) is that I was able to get up and walk around after

delivery and I did not have the recuperation of a c-section.

As far as a needle going into your back during labor (to Stacie); I just had a

myleogram (sp) last month - I was petrified of the needle hitting nerves from

the cord. My cord does not terminate where it should and without access to

previous MRI's to help guide the neuro-radiologist, it was even scarier.

They were able to place the needle into my back through lots of scar tissue

though. However, they were very careful. They first attempted to go in very

low in my back, but not only were they not able to get through the scar tissue

safely, the pain that the needle caused was incredible - signaling to them that

they were going into an area where the nerves/spinal cord was being affected.

They called in the head of neuro-radiology and she went in higher in my back and

all went fine. It barely hurt when she put the needle in (afterward was a

different story and it did hurt when she put it in initially, but she was quick

so was the pain from the needle).

I do hope you will seek out a doctor that is versed with previous tethered cords

and pregnancies/deliveries of babies.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT)

com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

Yes, I have said that my neurosurgeon said that if my OB's knew of my tethered

cord when I was pregnant with our children, they would have recommended a

c-section. However, looking back, I don't think it was until my fourth delivery

that things started rearing their ugly head. It really wasn't until I fell down

our cellar stairs (a very bad fall) that I started to experience symptoms that

interfered with my life (bladder/muscle wasting, etc.)

In a post I just sent, I stated that it wasn't until a fall that symptoms began,

but it was with my fourth delivery that vague problems began. However, truly,

the fall accelerated/caused symptoms to continue and also brought new problems

to the point where a diagnosis was made.

I was also told by my nsg that he would have told me to limit my pregnancies.

Carrying children (pregnancy) can put undue pressure on the back as anyone that

has been pregnant probably knows. This undue pressure can cause symptoms.

I am very fortunate, again looking back, that I did not know about my spinal

cord problems. If I had known, I don't know if I would have followed any doctor

recommendation to not have four pregnancies. However, because I didn't know - I

have four wonderful children (all adults now and all very healthy thankfully).

I am very grateful that I wasn't aware of my birth defect during this time in my

life.

I am grateful for many occurrences in my life because I did not know about the

Lipomeningocele. I don't know if I would have experienced what I have in life

if I knew the risks I was taking with a tethered cord.

Kathy

Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

thank you all. i'm not trying to start any debates or arguments by any means.

i go to my regular ob on tuesday. i was already high risk due to previous

miscarriages so he's a high risk doctor. i plan to talk to him about getting a

neurosurgeon and my back. delivery is still quite a ways away. just trying to

know what's going on now. i didn't think this would be a big deal. it hasn't

affected me since i had the surgery. now, any symptoms i have, i never know if

they're pregnancy or TSC. i didn't even really know what TSC was until i

researched it in the last few years. i was a child when i dealt with this.  

the reason i said  " knocked out " was because i didn't know if they would want

to do a spinal on me if they thought my back was problem to begin with. also,

the reason i said something about breast-feeding was because i didn't know how

my going under would affect that. anesthesia and all. this is my first child.

i've never delivered before so some of my questions might sound stupid.  

________________________________

To: tetheredspinalcord

Sent: Sat, January 16, 2010 12:20:23 PM

Subject: Re: Pregnency post tethered spinal cord

 

Stacie,

First, , I'm confused why you say that she is not retethered - did she

say that in a previous post? (Have not been able to keep up with the messages

from the list.)

Also - why must she have a c-section? I had four children, all vaginally. It

wasn't until I fell down my cellar stairs, four years after my fourth child was

born that symptoms from the undiagnosed Lipomeningocele were such that I

required medical attention which eventually (almost four/five years after the

fall) led to the diagnose of LMC/Chiari. If she is not retethered, then what do

you see as the medical risks to the degree that you state she must have a

c-section without medical advise of such? I think I've missed something by not

keeping up with this thread ...

Stacie - Why don't you speak with a neurosurgeon that has experience with

pregnancy and tethered cord. Ask what damage, if any, you risk by having a

delivery vaginally compared to c-section. Talk to a high-risk pregancy OB and

ask the same questions. If you are not retethered, then I don't understand why

someone without an OB beside their name would insist on telling you to have a

c-section. They may be correct, but you really need that advise from a doctor

that can examine you, review your medical records, and perform any tests that

are necessary (if any are needed) to assess your condition (previous tether and

surgery).

What do your breasts have to do with a tethered cord? I'm not being wise, but

don't see the association of breast feeding and a tethered cord. Would you

elaborate a bit? I breast fed three of our children for months and for a short

period of time with our last child. Absolutely no problems.

Labor with our fourth child was all in my back. Lots of people have back labor

with no known back problems though. I was told I had back labor because of the

position of my uterus - it was tilted at that point. I can't say if back labor

was better or worse than " normal " abdomen labor - just different.

I know a lot of people that have had C-sections and I can't think of one person

that was " knocked out " . All were awake with and got to see their baby right

after delivery. From a personal standpoint and my own personal opinion, if I had

been given the option of pushing a small watermelon through an opening that is

nothing even close to that size, I would have chosen a c-section. To me, the

only upsides to having a vaginal delivery vs. c-section (beyond the obvious of

surgery vs. no surgery) is that I was able to get up and walk around after

delivery and I did not have the recuperation of a c-section.

As far as a needle going into your back during labor (to Stacie); I just had a

myleogram (sp) last month - I was petrified of the needle hitting nerves from

the cord. My cord does not terminate where it should and without access to

previous MRI's to help guide the neuro-radiologist, it was even scarier.

They were able to place the needle into my back through lots of scar tissue

though. However, they were very careful. They first attempted to go in very low

in my back, but not only were they not able to get through the scar tissue

safely, the pain that the needle caused was incredible - signaling to them that

they were going into an area where the nerves/spinal cord was being affected.

They called in the head of neuro-radiology and she went in higher in my back and

all went fine. It barely hurt when she put the needle in (afterward was a

different story and it did hurt when she put it in initially, but she was quick

so was the pain from the needle).

I do hope you will seek out a doctor that is versed with previous tethered cords

and pregnancies/ deliveries of babies.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT) com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

When I was pregnant with my first child I didn't know I had a tethered spinal

cord with Lipoma, but I did develope a large cyst right between the crease of my

buttocks on top where there is a dimple and sinus tract it was very painful and

I had difficulty with walking or sitting, the doctor told me it was a pildonal

cyst, not sure if it was or it was something related to the tethered

spine.....after I gave birth and was taking a shower the cyst drained on it's

own and it never returned....my second son is the one who I believe could have a

tethered spine he has a sinus tract tiny hole leading into the spine and has

developed a cyst in that area 3 times already.... 

Sharon

________________________________

To: tetheredspinalcord

Sent: Fri, January 15, 2010 2:03:40 AM

Subject: Re: Pregnency post tethered spinal cord

 

Well, I was tethered when I had my two pregnancies so I really dont know what is

" normal " lol but seems like perhaps the baby's position might impede your

ability to go sometimes and it is certainly normal to pee alot and to leak occas

(I think) although that might be further along really. Wouldnt hurt to get it

checked out for sure. As for the tailbone..well ligaments are stretching and

accomodating a growing baby and everything is connected down there so it might

just all be normal stuff. Lets hope so

From: Randeejaeaol (DOT) com <Randeejaeaol (DOT) com>

Subject: Re: Pregnency post tethered spinal cord

To: tetheredspinalcord@ yahoogroups. com

Date: Thursday, January 14, 2010, 7:05 PM

 

My daughter is 19 now and I am eager to hear the responses that you get.

Certainly, you can find a NSG now to continue to follow you both through

your pregnancy and beyond. It can't hurt to have someone you know you can

call upon..same with a urologist. that might be the easiest place to start.

Please let us know what you discover and I hope others have experience to

share with you. blessings to your baby!!

In a message dated 1/14/2010 6:57:06 P.M. Central Standard Time,

gurltwitches@ yahoo.com writes:

I was diagnosed with tethered spinal cord when I was nine years old. The

doctors didn't give me alot of the details since I was so young, but they

moved along quickly to get me into MRIs and surgery. It's been 13 years since

the surgery with little problems. I kept going to the doctor for check ups

for a few years after but kind of just quit by time I made it to my teen

years. I haven't been back in quite some time, like ten years. Anyways, I'm

15 weeks pregnant now and my tailbone hurts alot. I'm also experiences some

difficulty passing urine. I have to push really hard and feel like have to

go alot. Sometimes I leak a little. I can't help but get paranoid that my

spine has re-tethered. I'm looking to talk to someone whose had this

experience or whose been pregnant with TSCS or who had it before pregnancy.

[Guest guest]

I never knew I had TSC with Lipoma and delivered 3 children vaginally, back then

they would put you to sleep with a mask over your face, no epidural and no

natural childbirth....

Sharon

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Sat, January 16, 2010 1:05:25 PM

Subject: Re: Pregnency post tethered spinal cord

 

I discussed the reason for c-section in my previous email. The

lithotomy position and straining are bad for people with TC. Many

women Dx with TC (or who don't know they have it) experience

neorological decline after vaginal delivery. It was either ,

or Kathy who said it happened to them. Without an epidural, u

would have to have general. You could deliver vaginally, but it would

be a risk of neuro decline.

Hopefully others who have been through it can give more insight and

firsthand experiences.

Jenn

Sent from my iPhone

On Jan 16, 2010, at 12:40, Stacie Harper <gurltwitches@ yahoo.com> wrote:

> Why do I have to have a C-Section? I was really hoping to give birth

> naturally and vaginally. I was already against getting an epidural

> because I have this big scar back there that I didn't want them

> messing with, but I'm a little scared to have a C-Section. Will they

> just knock me out? Could I still breast feed? I hate going under.

> I'm going to miss the whole experience of actually having my baby,

> aren't I?

>

> Just out of curiousity, are any of your periods very painful and in

> your back? I always figured mine were because of my back.

>

> ____________ _________ _________ __

> From: <ltbunny192aol (DOT) com>

> To: " tetheredspinalcord@ yahoogroups. com " <tetheredspinalcord@ yahoogroups.

com

> >

> Sent: Sat, January 16, 2010 4:48:36 AM

> Subject: Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

No, you're questions are not stupid at all. You should have heard the questions

I had through my first pregnancy ... I thought you were associating tethered

cord and breast-feeding and couldn't put them together.

I understand the questions and concern regarding breast-feeding and the medicine

needed during a c-section. Again, I know moms who breast fed after c-sections,

but I don't know if there's a time period that you cannot breast feed due to

those meds. Good question.

No arguments or debates. I just think we need to be careful when we say " you

must " when it comes to a decision that obviously needs to be made between a

medical doctor and the patient.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT)

com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

Stacie - no question is stupid in this group!!!! And you are going to get a lot

of different opinions on topics as everyone has had different experiences with

TC, but there is also a wealth of knowledge among members - no one is arguing,

just stating our opinions and experiences. All you can do is get as much

information as possible, discuss it all with your physicians and make the best

decision at the time that feels right for you. Since TC affects everyone

differently there is really no crystal ball to determine what the outcome of

surgeries, pregnancies, etc will have on everyone's condition.

Dee

To: tetheredspinalcord

From: gurltwitches@...

Date: Sat, 16 Jan 2010 10:43:23 -0800

Subject: Re: Pregnency post tethered spinal cord

thank you all. i'm not trying to start any debates or arguments by any

means.

i go to my regular ob on tuesday. i was already high risk due to previous

miscarriages so he's a high risk doctor. i plan to talk to him about getting a

neurosurgeon and my back. delivery is still quite a ways away. just trying to

know what's going on now. i didn't think this would be a big deal. it hasn't

affected me since i had the surgery. now, any symptoms i have, i never know if

they're pregnancy or TSC. i didn't even really know what TSC was until i

researched it in the last few years. i was a child when i dealt with this.

the reason i said " knocked out " was because i didn't know if they would want to

do a spinal on me if they thought my back was problem to begin with. also, the

reason i said something about breast-feeding was because i didn't know how my

going under would affect that. anesthesia and all. this is my first child. i've

never delivered before so some of my questions might sound stupid.

________________________________

To: tetheredspinalcord

Sent: Sat, January 16, 2010 12:20:23 PM

Subject: Re: Pregnency post tethered spinal cord

Stacie,

First, , I'm confused why you say that she is not retethered - did she

say that in a previous post? (Have not been able to keep up with the messages

from the list.)

Also - why must she have a c-section? I had four children, all vaginally. It

wasn't until I fell down my cellar stairs, four years after my fourth child was

born that symptoms from the undiagnosed Lipomeningocele were such that I

required medical attention which eventually (almost four/five years after the

fall) led to the diagnose of LMC/Chiari. If she is not retethered, then what do

you see as the medical risks to the degree that you state she must have a

c-section without medical advise of such? I think I've missed something by not

keeping up with this thread ...

Stacie - Why don't you speak with a neurosurgeon that has experience with

pregnancy and tethered cord. Ask what damage, if any, you risk by having a

delivery vaginally compared to c-section. Talk to a high-risk pregancy OB and

ask the same questions. If you are not retethered, then I don't understand why

someone without an OB beside their name would insist on telling you to have a

c-section. They may be correct, but you really need that advise from a doctor

that can examine you, review your medical records, and perform any tests that

are necessary (if any are needed) to assess your condition (previous tether and

surgery).

What do your breasts have to do with a tethered cord? I'm not being wise, but

don't see the association of breast feeding and a tethered cord. Would you

elaborate a bit? I breast fed three of our children for months and for a short

period of time with our last child. Absolutely no problems.

Labor with our fourth child was all in my back. Lots of people have back labor

with no known back problems though. I was told I had back labor because of the

position of my uterus - it was tilted at that point. I can't say if back labor

was better or worse than " normal " abdomen labor - just different.

I know a lot of people that have had C-sections and I can't think of one person

that was " knocked out " . All were awake with and got to see their baby right

after delivery. From a personal standpoint and my own personal opinion, if I had

been given the option of pushing a small watermelon through an opening that is

nothing even close to that size, I would have chosen a c-section. To me, the

only upsides to having a vaginal delivery vs. c-section (beyond the obvious of

surgery vs. no surgery) is that I was able to get up and walk around after

delivery and I did not have the recuperation of a c-section.

As far as a needle going into your back during labor (to Stacie); I just had a

myleogram (sp) last month - I was petrified of the needle hitting nerves from

the cord. My cord does not terminate where it should and without access to

previous MRI's to help guide the neuro-radiologist, it was even scarier.

They were able to place the needle into my back through lots of scar tissue

though. However, they were very careful. They first attempted to go in very low

in my back, but not only were they not able to get through the scar tissue

safely, the pain that the needle caused was incredible - signaling to them that

they were going into an area where the nerves/spinal cord was being affected.

They called in the head of neuro-radiology and she went in higher in my back and

all went fine. It barely hurt when she put the needle in (afterward was a

different story and it did hurt when she put it in initially, but she was quick

so was the pain from the needle).

I do hope you will seek out a doctor that is versed with previous tethered cords

and pregnancies/ deliveries of babies.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT) com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

Stacie,

I do not have TC but I have had 3 CS and have breastfed two of my three kids

(my son was a nightmare and I ended up pumping breast milk for year for

him). My girls latched 55 minutes after CS and 45 minutes after CS with

them.

There are plenty of pain meds available that are breastfeeding friendly.

Just be sure to tell them you are breastfeeding.

Another thought, I would contact the Lactation lady at the hospital. Talk

with her about your concerns. Get support in place.

Are you sure you will need a General with the CS?

Anne

Mama to Conner, le and Delaney

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of DK Moulton

Sent: Saturday, January 16, 2010 1:50 PM

To: tetheredspinalcord

Subject: Re: Pregnency post tethered spinal cord

No, you're questions are not stupid at all. You should have heard the

questions I had through my first pregnancy ... I thought you were

associating tethered cord and breast-feeding and couldn't put them together.

I understand the questions and concern regarding breast-feeding and the

medicine needed during a c-section. Again, I know moms who breast fed after

c-sections, but I don't know if there's a time period that you cannot breast

feed due to those meds. Good question.

No arguments or debates. I just think we need to be careful when we say " you

must " when it comes to a decision that obviously needs to be made between a

medical doctor and the patient.

Kathy

Re: Pregnency post tethered spinal cord

Hey I'm 24 and have a 9 month old so I know exactly what your going

thru since I just did lol. Your not retethred. Your going to have lots

of weird and scary symptoms. The bladder is just normal pregnancy and

maybe a little baby. The tailbone is from the tsc and it just not

being normal back there. Hate to break it to you but the pain gets

worse. Also you need to tell your drs you must have a c-section

sedation do not let them do an epi dural. It's the safest for you and

baby. My nuero consulted with me whole pregnancy. If you want more

info about that just ask I can get more in depth. Contact me ltbunny192aol (DOT)

com

I'll tell you anything you wanna know and my whole story if you

like. Congrats and stay strong it's worth all the pain in the end!

.

Sent from my iPhone

On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

wrote:

> I was diagnosed with tethered spinal cord when I was nine years old.

> The doctors didn't give me alot of the details since I was so young,

> but they moved along quickly to get me into MRIs and surgery. It's

> been 13 years since the surgery with little problems. I kept going

> to the doctor for check ups for a few years after but kind of just

> quit by time I made it to my teen years. I haven't been back in

> quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> and my tailbone hurts alot. I'm also experiences some difficulty

> passing urine. I have to push really hard and feel like have to go

> alot. Sometimes I leak a little. I can't help but get paranoid that

> my spine has re-tethered. I'm looking to talk to someone whose had

> this experience or whose been pregnant with TSCS or who had it

> before pregnancy.

>

>

[Guest guest]

Pushing in the supine position puts great strain on a tethered cord and it can

cause symptoms to appear and worsen. You don't HAVE to have a c-section. Lots of

us didn't. But some of us didn't and had to have surgery to try to alleviate the

problems it caused. By the time I was pregnant with number four, and had two

surgeries behind me, I had no desire to risk more decline.

I was awake for my c-section. I didn't have an epidural. It was medicine in my

spine, but not in the epidural space. I'm not sure exactly what it was, maybe it

was called a spinal, but I was there for my fourth birth, and my goodness, had I

known how easy a c-section was, I'd have asked for them earlier. I just laid

there while the doctor did all the work and I got a beautiful baby out of it.

Sweet deal! It didn't interfere with breastfeeding. The meds I took while

pregnant did that, but the birth didn't. A lot of women have c-sections and

still breast feed.

You should speak to the anesthesiologist before it's time to give birth. The guy

I had was amazing and knew exactly where to place things so they didn't cause

any problems. I think it was above my scar, but I can't be sure. But in the end,

you can choose to have a vaginal birth. But if I was you, I'd speak to my

neurologist and get his opinion. Really, a doctor who is familiar with your

spine would have a better idea of what you might expect than any of us.

On Jan 16, 2010, at 12:40, Stacie Harper <gurltwitches@ yahoo.com> wrote:

> Why do I have to have a C-Section? I was really hoping to give birth

> naturally and vaginally. I was already against getting an epidural

> because I have this big scar back there that I didn't want them

> messing with, but I'm a little scared to have a C-Section. Will they

> just knock me out? Could I still breast feed? I hate going under.

> I'm going to miss the whole experience of actually having my baby,

> aren't I?

>

> Just out of curiousity, are any of your periods very painful and in

> your back? I always figured mine were because of my back.

>

> ____________ _________ _________ __

> From: <ltbunny192aol (DOT) com>

> To: " tetheredspinalcord@ yahoogroups. com " <tetheredspinalcord@ yahoogroups.

com

> >

> Sent: Sat, January 16, 2010 4:48:36 AM

> Subject: Re: Pregnency post tethered spinal cord

>

>

> Hey I'm 24 and have a 9 month old so I know exactly what your going

> thru since I just did lol. Your not retethred. Your going to have lots

> of weird and scary symptoms. The bladder is just normal pregnancy and

> maybe a little baby. The tailbone is from the tsc and it just not

> being normal back there. Hate to break it to you but the pain gets

> worse. Also you need to tell your drs you must have a c-section

> sedation do not let them do an epi dural. It's the safest for you and

> baby. My nuero consulted with me whole pregnancy. If you want more

> info about that just ask I can get more in depth. Contact me

> ltbunny192aol (DOT) com

> I'll tell you anything you wanna know and my whole story if you

> like. Congrats and stay strong it's worth all the pain in the end!

> .

>

> Sent from my iPhone

>

> On Jan 14, 2010, at 7:56 PM, " gurltwitches " <gurltwitches@ yahoo.com>

> wrote:

>

> > I was diagnosed with tethered spinal cord when I was nine years old.

> > The doctors didn't give me alot of the details since I was so young,

> > but they moved along quickly to get me into MRIs and surgery. It's

> > been 13 years since the surgery with little problems. I kept going

> > to the doctor for check ups for a few years after but kind of just

> > quit by time I made it to my teen years. I haven't been back in

> > quite some time, like ten years. Anyways, I'm 15 weeks pregnant now

> > and my tailbone hurts alot. I'm also experiences some difficulty

> > passing urine. I have to push really hard and feel like have to go

> > alot. Sometimes I leak a little. I can't help but get paranoid that

> > my spine has re-tethered. I'm looking to talk to someone whose had

> > this experience or whose been pregnant with TSCS or who had it

> > before pregnancy.

> >

> >

>

>

[Guest guest]

Perhaps I was just really lucky, but I didn't take any pain meds after the

c-section. I didn't need them.

I think when you have general anesthesia, since it travels your system,

breastfeeding might not be possible right away for several reasons. Mom has to

wake up, baby in utero will be affected at least a little bit by the general,

and then there is the residual medication that has to work it's way through and

out or it can affect the baby.

As I stated before, I didn't have general anesthesia, even though I thought

that's what I wanted. The anesthesiologist talked me out of it and I am so glad.

I think he just needs to know what he's dealing with before it's time to

administer.

________________________________

To: tetheredspinalcord

Sent: Sat, January 16, 2010 5:03:03 PM

Subject: RE: Pregnency post tethered spinal cord

Stacie,

I do not have TC but I have had 3 CS and have breastfed two of my three kids

(my son was a nightmare and I ended up pumping breast milk for year for

him). My girls latched 55 minutes after CS and 45 minutes after CS with

them.

There are plenty of pain meds available that are breastfeeding friendly.

Just be sure to tell them you are breastfeeding.

Another thought, I would contact the Lactation lady at the hospital. Talk

with her about your concerns. Get support in place.

Are you sure you will need a General with the CS?

Anne

Mama to Conner, le and Delaney

[Guest guest]

I had an epi with Conner (I was induced). Then I had a spinal with

le and Delaney. Spinal was MUCH better.

Anne

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Weaver

Sent: Saturday, January 16, 2010 5:41 PM

To: tetheredspinalcord

Subject: Re: Pregnency post tethered spinal cord

Perhaps I was just really lucky, but I didn't take any pain meds after the

c-section. I didn't need them.

I think when you have general anesthesia, since it travels your system,

breastfeeding might not be possible right away for several reasons. Mom has

to wake up, baby in utero will be affected at least a little bit by the

general, and then there is the residual medication that has to work it's way

through and out or it can affect the baby.

As I stated before, I didn't have general anesthesia, even though I thought

that's what I wanted. The anesthesiologist talked me out of it and I am so

glad. I think he just needs to know what he's dealing with before it's time

to administer.

________________________________

From: Anne Klein <ChocolateKat@ <mailto:ChocolateKat%40msn.com> msn.com>

To: tetheredspinalcord@ <mailto:tetheredspinalcord%40yahoogroups.com>

yahoogroups.com

Sent: Sat, January 16, 2010 5:03:03 PM

Subject: RE: Pregnency post tethered spinal cord

Stacie,

I do not have TC but I have had 3 CS and have breastfed two of my three kids

(my son was a nightmare and I ended up pumping breast milk for year for

him). My girls latched 55 minutes after CS and 45 minutes after CS with

them.

There are plenty of pain meds available that are breastfeeding friendly.

Just be sure to tell them you are breastfeeding.

Another thought, I would contact the Lactation lady at the hospital. Talk

with her about your concerns. Get support in place.

Are you sure you will need a General with the CS?

Anne

Mama to Conner, le and Delaney