advice for pseudomeningocele

[Guest guest]

Does anyone know if pseudomeningocele will go away with time? I am getting

conflicting information and am wondering if anyone here has knowledge or

experience with this.

Thanks, Carol

[Guest guest]

Is this from surgery?

I have had two pseudomeningocele repairs - one after my initial untethering and

then the other after the 3rd or 4th (can't recall which surgery).

The first one (leak) was under my skin and it looked like a nerf football was at

the base of my spine. It was repaired surgically about three weeks after it

started. I had to lay flat for three weeks at home to try to get it stop on its

own.

The second one leaked to the outside. I would soak through a towel that was

folded so there were four layers under my back. I had to lay flat for 50+ days

to try to get it to stop leaking. It didn't stop and finally had surgery.

I know other members have had these leaks, whether contained under the skin or

leaking to the outside of the body, stop on their own. Mine didn't and each

surgery to repair the leaks were at least a few hours and then the recuperation

was the same as the untethering.

Kathy

advice for pseudomeningocele

Does anyone know if pseudomeningocele will go away with time? I am getting

conflicting information and am wondering if anyone here has knowledge or

experience with this.

Thanks, Carol

[Guest guest]

I am assuming this is the same thing as a spinal fluid leak? I had a leak that

started about 8 days post surgery -- it presented itself will a very large lump

on my back over the incision area (+ those lovely headaches which for me

wouldn't go away with lying down). Mine went away on it's own and I just took

it easy for a couple of weeks (which was easy to do as I was just post surgery).

It took over a month for the lump to go down. My NS at the time told me to wait

it out as long as there was no fluid leaking out of the skin/wounds. If it

doesn't heal on it's own surgery may be required.

To: tetheredspinalcord

From: kmoulton@...

Date: Fri, 6 May 2011 08:34:22 -0400

Subject: Re: advice for pseudomeningocele

Is this from surgery?

I have had two pseudomeningocele repairs - one after my initial untethering and

then the other after the 3rd or 4th (can't recall which surgery).

The first one (leak) was under my skin and it looked like a nerf football was at

the base of my spine. It was repaired surgically about three weeks after it

started. I had to lay flat for three weeks at home to try to get it stop on its

own.

The second one leaked to the outside. I would soak through a towel that was

folded so there were four layers under my back. I had to lay flat for 50+ days

to try to get it to stop leaking. It didn't stop and finally had surgery.

I know other members have had these leaks, whether contained under the skin or

leaking to the outside of the body, stop on their own. Mine didn't and each

surgery to repair the leaks were at least a few hours and then the recuperation

was the same as the untethering.

Kathy

advice for pseudomeningocele

Does anyone know if pseudomeningocele will go away with time? I am getting

conflicting information and am wondering if anyone here has knowledge or

experience with this.

Thanks, Carol

[Guest guest]

I am admitedly perplexed my this diagnosis. My cord was tethered via a

transititional lipoma that was both intra-dural and outside the dura. I have

always had a lump at the bottom of my spine. This " lump " flucuates in size. MRI

prior to detethering did not identify pseudomengingocele. Therefore, I assume

that this is a result of surgery. The MRI report said it was a small to

moderate pseudomengingocele. No one has suggested surgery to repair it which

contrary to information I have found researching on the Internet. I am

confused. It does not look like a nerf ball. I am wondering if this part of the

healing process? I plan to cut back on work hours and rest more. I am

wondering if it that simple - rest.

>

> Is this from surgery?

>

> I have had two pseudomeningocele repairs - one after my initial untethering

and then the other after the 3rd or 4th (can't recall which surgery).

>

> The first one (leak) was under my skin and it looked like a nerf football was

at the base of my spine. It was repaired surgically about three weeks after it

started. I had to lay flat for three weeks at home to try to get it stop on its

own.

>

> The second one leaked to the outside. I would soak through a towel that was

folded so there were four layers under my back. I had to lay flat for 50+ days

to try to get it to stop leaking. It didn't stop and finally had surgery.

>

> I know other members have had these leaks, whether contained under the skin or

leaking to the outside of the body, stop on their own. Mine didn't and each

surgery to repair the leaks were at least a few hours and then the recuperation

was the same as the untethering.

>

> Kathy

>

>

> advice for pseudomeningocele

>

>

>

> Does anyone know if pseudomeningocele will go away with time? I am getting

conflicting information and am wondering if anyone here has knowledge or

experience with this.

>

> Thanks, Carol

>

>

>

>

>

>

[Guest guest]

I developed a CSF leak after my first surgery. I was put on strict bed rest

for 48 hrs (which I disregarded. They had removed my foley and I REFUSED to

use a bedpan. The RN said she wouldn't help me up - since it was against MD

orders - but that she wouldn't let me fall, either (I couldn't get up from a

seated position w/o assistance since I was only 2 days post-op. I just dealt

with the horrible headache while I used the bedside commode and then laid

down and it resolved. That tells you how much I HATE bedpans - I'll take a

spinal fluid headache over a bedpan. LOL

Anyway, mine resolved after about 36 hrs bed rest (well, less the few times

I got up for the bedside commode). If it hadn't, then he was going to do a

blood patch to try and seal it. Only if that didn't work, would he have done

another surgery to correct it. But, he was also not a pedi nsg or very

experienced with NTDs, so I think he was a little more aggressive in

treating it than it seems most nsg's are (they seem to give them more time

on bed rest to correct and seal themselves.

Jenn

>

>

> I am admitedly perplexed my this diagnosis. My cord was tethered via a

> transititional lipoma that was both intra-dural and outside the dura. I have

> always had a lump at the bottom of my spine. This " lump " flucuates in size.

> MRI prior to detethering did not identify pseudomengingocele. Therefore, I

> assume that this is a result of surgery. The MRI report said it was a small

> to moderate pseudomengingocele. No one has suggested surgery to repair it

> which contrary to information I have found researching on the Internet. I am

> confused. It does not look like a nerf ball. I am wondering if this part of

> the healing process? I plan to cut back on work hours and rest more. I am

> wondering if it that simple - rest.

>

>

>

> >

> > Is this from surgery?

> >

> > I have had two pseudomeningocele repairs - one after my initial

> untethering and then the other after the 3rd or 4th (can't recall which

> surgery).

> >

> > The first one (leak) was under my skin and it looked like a nerf football

> was at the base of my spine. It was repaired surgically about three weeks

> after it started. I had to lay flat for three weeks at home to try to get it

> stop on its own.

> >

> > The second one leaked to the outside. I would soak through a towel that

> was folded so there were four layers under my back. I had to lay flat for

> 50+ days to try to get it to stop leaking. It didn't stop and finally had

> surgery.

> >

> > I know other members have had these leaks, whether contained under the

> skin or leaking to the outside of the body, stop on their own. Mine didn't

> and each surgery to repair the leaks were at least a few hours and then the

> recuperation was the same as the untethering.

> >

> > Kathy

> >

> >

> > advice for pseudomeningocele

> >

> >

> >

> > Does anyone know if pseudomeningocele will go away with time? I am

> getting conflicting information and am wondering if anyone here has

> knowledge or experience with this.

> >

> > Thanks, Carol

> >

> >

> >

> >

> >

> >

[Guest guest]

I am six months post-op. This is apparently different than csf leak. (or a

different form of csf leak - or perhaps a former leak that is now encased

creating a pocket of fluid?)I have no idea..

> > >

> > > Is this from surgery?

> > >

> > > I have had two pseudomeningocele repairs - one after my initial

> > untethering and then the other after the 3rd or 4th (can't recall which

> > surgery).

> > >

> > > The first one (leak) was under my skin and it looked like a nerf football

> > was at the base of my spine. It was repaired surgically about three weeks

> > after it started. I had to lay flat for three weeks at home to try to get it

> > stop on its own.

> > >

> > > The second one leaked to the outside. I would soak through a towel that

> > was folded so there were four layers under my back. I had to lay flat for

> > 50+ days to try to get it to stop leaking. It didn't stop and finally had

> > surgery.

> > >

> > > I know other members have had these leaks, whether contained under the

> > skin or leaking to the outside of the body, stop on their own. Mine didn't

> > and each surgery to repair the leaks were at least a few hours and then the

> > recuperation was the same as the untethering.

> > >

> > > Kathy

> > >

> > >

> > > advice for pseudomeningocele

> > >

> > >

> > >

> > > Does anyone know if pseudomeningocele will go away with time? I am

> > getting conflicting information and am wondering if anyone here has

> > knowledge or experience with this.

> > >

> > > Thanks, Carol

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

What is your NS suggesting?

To: tetheredspinalcord

From: cbrimhall@...

Date: Sat, 7 May 2011 16:13:56 +0000

Subject: Re: advice for pseudomeningocele

I am six months post-op. This is apparently different than csf leak. (or a

different form of csf leak - or perhaps a former leak that is now encased

creating a pocket of fluid?)I have no idea..

> > >

> > > Is this from surgery?

> > >

> > > I have had two pseudomeningocele repairs - one after my initial

> > untethering and then the other after the 3rd or 4th (can't recall which

> > surgery).

> > >

> > > The first one (leak) was under my skin and it looked like a nerf football

> > was at the base of my spine. It was repaired surgically about three weeks

> > after it started. I had to lay flat for three weeks at home to try to get it

> > stop on its own.

> > >

> > > The second one leaked to the outside. I would soak through a towel that

> > was folded so there were four layers under my back. I had to lay flat for

> > 50+ days to try to get it to stop leaking. It didn't stop and finally had

> > surgery.

> > >

> > > I know other members have had these leaks, whether contained under the

> > skin or leaking to the outside of the body, stop on their own. Mine didn't

> > and each surgery to repair the leaks were at least a few hours and then the

> > recuperation was the same as the untethering.

> > >

> > > Kathy

> > >

> > >

> > > advice for pseudomeningocele

> > >

> > >

> > >

> > > Does anyone know if pseudomeningocele will go away with time? I am

> > getting conflicting information and am wondering if anyone here has

> > knowledge or experience with this.

> > >

> > > Thanks, Carol

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

wait and see...

i am going to try to cut back my work hours and get more r & r

> > > >

> > > > Is this from surgery?

> > > >

> > > > I have had two pseudomeningocele repairs - one after my initial

> > > untethering and then the other after the 3rd or 4th (can't recall which

> > > surgery).

> > > >

> > > > The first one (leak) was under my skin and it looked like a nerf

football

> > > was at the base of my spine. It was repaired surgically about three weeks

> > > after it started. I had to lay flat for three weeks at home to try to get

it

> > > stop on its own.

> > > >

> > > > The second one leaked to the outside. I would soak through a towel that

> > > was folded so there were four layers under my back. I had to lay flat for

> > > 50+ days to try to get it to stop leaking. It didn't stop and finally had

> > > surgery.

> > > >

> > > > I know other members have had these leaks, whether contained under the

> > > skin or leaking to the outside of the body, stop on their own. Mine didn't

> > > and each surgery to repair the leaks were at least a few hours and then

the

> > > recuperation was the same as the untethering.

> > > >

> > > > Kathy

> > > >

> > > >

> > > > advice for pseudomeningocele

> > > >

> > > >

> > > >

> > > > Does anyone know if pseudomeningocele will go away with time? I am

> > > getting conflicting information and am wondering if anyone here has

> > > knowledge or experience with this.

> > > >

> > > > Thanks, Carol

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >