SF leaks to the outside

[Guest guest]

Hi Suzanne,

Just wanted to let you know - when I had my second leak after my fourth

untethering, I had spinal fluid leaking - to the outside of me - for over 55

days. It's not always a medical emergency - especially after our surgery. My

spinal fluid would leak in such large amounts when I sat up or walked that it

would soak towels - massive head pains from this. But, as long as I laid flat,

it just dripped out.

I was put on bed rest with pressure put on the area of the leak, but after the

57th day, they went back in, found the leak, patched it and the rest is history.

My first leak looked like a nerf football under my incision - never leaked to

the outside.

I would have thought both of these large leaks would have been medical

emergencies, but neither was because there was no infection, no meningitis, etc.

The only reason my nsg went back in to find the second leak was because he

finally realized I just couldn't take laying in my bed another day. If I had

wanted, I could have tried to get the leak to stop for many, many more weeks.

Kathy

Re: Re: Re: Low Pressure Headaches

- ditto, ditto, ditto! I honestly felt like

they just wanted to cut me open to actually see how I

had managed to live a nearly completely normal life

and that they would be viewing a birth defect

generally seen only in textbooks. However, with the

advent of MRI's we are seeing many, many who have some

version of this birth defect. You know, I would get a

God awful headache maybe every couple of YEARS - not

daily like now - and due to the lenghty span of time

between ther symptoms I would never even mention them

to my family doctor who I am sure would never have

been able to see a pattern himself. It was the MRI

that has brought us all together. And the really

stupid doctors we have seen ... well, somebody had to

graduate last in their class now didn't they? One doc

when told I had a CSF leak ask me if I wore some type

of little pad over it? Ah, doc when your CSF is

actually leaking OUTSIDE of the body this would be

considered a neuro emergency! Not some one would put

some thype of pantie liner over - lalalalal. I did

have 120cc's of CSF aspirated outta my back from a

large pool of CSF that had collected once. A

nightmare, a living nighmare.

suzanne

> Suzanne,

>

> AAAAHhhhhhh, magic. Isn't that what we are all

> looking for? lol {or a

> miracle} I think this list would close if we could

> all get either of those,

> save for maybe sticking around to tell others

> where/how to get their dose of

> instant magic/miracle. I know what you mean about

> being brave and surgery.

> My first TCS surgery was the first surgery I had

> ever had in my life. While

> I was nervous, I wasn't terrifed or anything. I had

> no frame of reference.

> But boy, oh, boy, when I woke up with the most

> horrific pain of my life, it

> was an eye opening experience to what surgery was.

> I also know what you

> mean about hindsight and symptoms. If I had known

> what the complications of

> surgery can be and all, I really would have stuck

> things out. I mean, I

> thought I was in horrible pain when I was first

> diagnosed -- just horrible

> back pain. In retrospect, that was nothin'! I much

> would have rather dealt

> with that pain and walking 100% normally everyday

> than what I am going

> through. But the neurosurgeon I saw for a consult

> basically scared me into

> the surgery. He said that he didn't know how I

> never had problems growing

> up (not only did I have TCS, but also

> diastematomyelia). He had never seen

> an adult with a spine and cord as messed up as mine

> and still be able to

> walk. He told me that if I left everything alone

> that my pain would get

> worse and would eventually lose control of my bowel

> and bladder and possible

> end up paralyzed (how prophetic! -- Just didn't know

> it would be the

> surgeries that would do it. I assumed it would be

> the disease process that

> would cause it). But if I had known that the

> retether happens from the

> surgery itself and it is just a crapshoot whether

> that tether becomes

> symptomatic or not, I would have taken my chances

> with my original condition

> and manage the pain. If and only if I developed

> some kind of neurological

> deficits I could have made the decision to have

> surgery then. But, I didn't

> have that knowledge then, so I can't go back. I

> just live with the

> decisions I made realizing that I made the right

> decisions based on the

> knowledge that I had at the time and there really

> wasnt any way to get this

> inside knowledge -- its not like the surgeons are

> telling people (well, some

> are, but they seem to be in the minority). So, I

> know that God has a plan

> for me -- walking or rolling. If I had not been

> paralyzed then I would not

> have had the opportunity to meet a lot of really

> wonderful people that I

> have met at Shepherd.

>

> Anyway, I understand your feelings about looking

> back on your decisions with

> the knowledge you have now. Just know that you made

> the best decision you

> could with the information you had at the time.

>

> Jenn

>

> On 10/15/07, suzanne gardner

> wrote:

> >

> > If I could somehow known then before the surgery

> what

> > I now know I would have taken a far, far more

> > conservative approach and just waited and watched

> as

> > my symtoms were relatively minor compared to what

> I

> > now cope with daily. Magic, I want magic! I would

> > never be brave enough to have surgery again.

> >

> >

> > > Suzanne,

> > >

> > > I had a lumbar drain after my second surgery.

> BOY

> > > did I HATE it! I don't

> > > remember much of it (they kept me sedated when

> it

> > > was in. I remember waking

> > > up one time and my mom was there and I just kept

> > > telling her that I had to

> > > get up (I was on bedrest with my head flat --

> well

> > > no higher than 30

> > > degrees). I remember her telling me that I

> wasn't

> > > allowed to walk b/c I had

> > > this thing in my back. So I was trying to

> convince

> > > her to just let me sit

> > > on the side of the bed. She was trying to hold

> me

> > > down and I was trying to

> > > get up. She was yelling for the nurse. I

> remember

> > > the nurse coming in and

> > > that was it. The next memory I had was probably

> > > the day before they

> > > removed it. I had a HORRIBLE headache

> (apparently I

> > > had a horrible headache

> > > the entire time I had this drain in). Then, I

> > > remember the doc taking it

> > > out. I think that was one of the most painful

> > > things I have ever been

> > > through. When I was going in for my third

> surgery,

> > > I specifically asked if

> > > I was going to have to have one of those drains.

> I

> > > think that " no " was one

> > > of the most glorious answers I ever heard.

> > >

> > > I didn't develop a leak after the drain was

> removed.

> > > he said he put in the

> > > drain to prevent me from developing a leak -- it

> > > must have worked. I didn't

> > > develop a leak after that surgery, but I did

> develop

> > > on after my first. I

> > > developed it about 3 days post-op. Every time I

> > > would stand, it felt like

> > > my head was going to explode. Even sitting would

> > > not relieve the pain.

> > > Only laying down would relieve the pain. I think

> 48

> > > hrs on my back was

> > > enough to heal the leak (although I still got up

> to

> > > use the bedside commode

> > > -- I was pretty adamant that I was not going to

> use

> > > the bedpan and they

> > > refused to put the catheter back in). So I just

> > > suffered through the pain

> > > to pee in the bedside commode. I just put my

> head

> > > down between my knees (as

> > > far as I could) and that seemed to help relieve

> the

> > > pain long enough for me

> > > to pee quickly and get back in bed.

> > >

> > > I sympathize with anyone who has headaches from

> low

> > > CSF.

> > >

> > > Jenn

> > >

> > > On 10/11/07, suzanne gardner

> > > <babybing2004@...

> <babybing2004%40yahoo.com>> wrote:

> > > >

> > > > Hello - I have low pressure headaches due to a

> > > large

> > > > CSF leak at L4-5 ... it was created when the

> NS

> > > > inserted a drain and when they removed it -

> BAM -

> > > big

> > > > time leak. It feels like getting hit right

> acrosss

> > > the

> > > > forhead with a 2x4 everytime I sit up from, a

> > > > reclining position and the very top of my

> skull

> > > > sometimes burns but the really odd sensation

> is in

> > > > front on my face, it is difficult to describe,

> its

> > > > like if you were to place a wet wash cloth

> sort of

> > > > randomly across one side of your face and

> finally

> > > > there is the " needle in the eye " sensation

> which I

> > > > really hate ...

> > > >

> > > > suzanne

>

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