CSF Leak

[dani43946]

Hi everyone. Wanted to let everyone know that I am doing a bit better "compared to last week of course." I am now 4 1/2 weeks post op. And things are improving.
I had posted on here before about going to the ER because of massive HAs and having a LP to bring my pressure down. After, I had the worst HAs and was pretty much in bed until this past Sat. I woke up, no headache. Sun., no headache. Today, a little HA.
My worry is my CSF Leak. When I was in Pitts., he did a CT scan and told me I had a small leak. Nothing to worry about. My body would absorb it. It was always to the right of my wound at the base. Now it has moved directly behind my wound and is bulged out more. He told me not to worry unless it became the size of a baseball. Should I worry?
Also, what is a blood patch and how is it performed? I am hoping it has nothing to do with an epidural or LP, because it is not happening. They had a terrible time with my LP and I truely believe I had a spinal headache for a week and a half.
Oh my........I am so tired. Just want answers. You all know how exhausting that can get.
Thanks for letting me go on and on and on.
If anyone has any answers, I would appreciate it.
((Hugs))
Dani

[*Stormy*]

Wow I have to say that is very interesting that your son has a PTC and your daughter has Chiari...

I'm glad you pushed that MRI!!!

Carolyn

[hernandez7]

my 16 year old son was diagnosed with the psuedotumor almost a year ago.i do know it causes severe headaches and it can cause visual field problems.his first lp they said his pressure was off the charts and had to do such a large drop that it made the headaches worse for over a week than the headaches got better for awhile than came back .he recieved another lp 4 months later.now i know they have discussed the possiblity of having to do a shunt.they did put him on meds to try 2 help.i know nothing about the caffiene thing though.i hope you can get the help you need.i did force them to get a mri to make sure he didn't have chiari like my baby.but was told it was negative.

[selmaS]

I wouldn't tell u if a dr hadn't told me : )

Glad u had it verified tho : )

"selma"

PS- glad u r going to rest too

[dani43946]

I will Selma. And thank you.
Oh....I did want to tell you that the caffeine thing is so true that the nurse I talked to today worked at Children's Hospital. She said that they would give the chiari kids caffeine drips through their IVs. How neat is that!!!! So I guess it is drink up for me :0) Oh....and rest even more :0(

[selmaS]

Sorry u got that news, but until Monday...try to lie flat, drink water and some drinks with caffeine....or some dark chocolate will do : )

But please rest

"selma"

[dani43946]

So I called the NS and I am scheduled to go to Pittsburgh on Monday. I told them about my chills and how I am freezing all the time, my stiff neck, the sensitivity to light, the headaches. The hubby was concerned I may have meningitis. But because I have no fever, they said no.
They said it was all being caused by the leak. I asked her what they were going to do and she said that it depended on the findings of the CT Scan. I point blank asked her if I was going to have to have a shunt placed and she said quite possibly a temporary one.
Ughhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!

[shanmomof3]

Hey dear, i feel your pain! I dont think mine is as big as yours, but i'm dealing with a leak too. Listen to selma! And something my dr told me is that when you are layin down it has to be FLAT, maybe a very thin pillow but thats it. He said that with this surgery even propped up on pillows or sitting in a recliner was the same as standing up. Now i had the regular pfd not the endoscopic, dont know if that makes a difference. I'm 4 weeks post op and I've only left my house twice (once to get staples removed) once you get that leak it just takes time to get over it. Hope you are feelin better soon! Blessings ~ Shannon

[selmaS]

LIE IN BED !!! up to 5 days...drink plenty of water and some caffeinated  drinks.
'
But u need to stay in bed and rest!!

If this does not work, then they try a blood patch (use ur blood)...and it may take a few tries...if this does not work surgery to close up the leak is the only option.

It could be pusedotumor cerebri which can develop after surgery too.

REST !!! : )

"selma"

[dani43946]

I am calling the NS in the morning. The hubby says it is getting bigger. And he is worried because I am sneezing all the time. And I have drainage down the back of my throat. I told him that maybe I have a cold and he says that it doesnt sound like I have a cold.
It is bulged out a bit, but it is more wide than anything. I guess I havent been resting resting....Sat. and Sun I felt pretty good and went a few places, esp since it was Fathers Day.
What exactly are the steps when one has a CSF leak??

[*Stormy*]

Hang in there!! Make sure you rest a lot and I pray that things will get better for you and that leak will patch itself up!!

Carolyn

[denverluv]

I hope you get to feeling better and find out what's going on- prayers for you.

[selmaS]

Hi....so sorry u r still dealing with this....And that lying down has not helped.

A blood patch is just that a injection of ur blood into ur cord that will patch the leak.....I know this technique has been used for may yrs as I almost got one in '84 when I had a leak from an epidural.

The only other way to correct this if lying down, drinking plenty of water and caffeine didn't work then they try the blood patch then surgery.....

I understand ur concerns, but u deff want to know ...the other possibility is pusedotumor cerebri...hydrocephalous can develop after PFD.....

one can assume that ur little leak may not be so little......

Keep on resting

"selma"