post-op csf leaks-- what do they feel like?

[sunnyset]

i don't think i have a csf leak but my head started hurting a bit more after i finally got to wash my hair. i know it's just my nerves that are sensitive but when i stand up i feel a bit of a headache or some liquid moving in my brain. i might just need to take it a bit easier... but just wanted to know what it felt like for those of you who have had it so that i can cross it off my list of things to worry about.

thanks.

[sunnyset]

thanks for your responses. i was scared that my headaches (which eventually lead me to have nausea) was a possible csf leak but after talking to my nurse and watching my symptoms, i don't believe it is. just wanted to be reassured. i do not feel any liquid in my head and there is no drainage on my pillows. i think i was just having a headache.

as far as showering goes, we bought a showerhead that we can move around.. not sure what those are exactly called. but i just put it over my head and around the sides. i have very long hair so the water is never directed right at my incision. i make sure to massage my scalp very gently avoiding the area. when i brushed my hair after the first wash.. alot of hair came off too! i'm washing my hair sparingly.. first time was on thursday and 2nd time was today.

i really thank you guys for taking the time to read and answer some questions! love this forum.

[selmaS]

  Hi...zygy is quite use to the symptoms of a leak...and for a new zipper it is possible to have it leak that u feel wet, but that is not an indication of a leak as it can be an internal leak....it is the symptoms that u must look at...most times it is positional...feeling worse when upright..to the point of nausea...can not stand light, sound...etc...

But everyone is different....

  Be careful when washing ur hair....do not wash it often as it dries the skin out on the scar and causes pulling....and it is recommended we use J&J baby shampoo....

  Post op, I did not use the shower, I took baths and had my DH wash my hair at the kitchen sink as it was easy for him to see where the scar was, and I did not like the water hitting my head.....plus I was able to stand and lean  against the sink bending at the waist not my neck....and I could use my arms to hold my head  still ....I also had a lot of  hair that fell out post op...I was told this is the result of the trauma of surgery....

  We are all  different. this may work better for u...

  

[zygy2]

I have had two leaks (currently still have my second one).  My first one caused me to have symptoms again by creating pressure in the area that the chiari was a problem in the first place.  Some people get lumps on the back of their head so it is easy to see the leak.  Some people with Chiari just have pressure problems and you head can feel bad just because of that.  I am having a spinal tap next week to check my csf pressure.  This is why you want your NS to watch over you.  A three month MRI is a wonderful thing, that will show how the surgery did and if there are any leaks.  If symptoms are bad they may want to do one sooner.  It is a difficult surgery though and time will help.  I am 7 months post op from my third surgery and the back of my head is still weird.  I still get zaps and if I tap my head I can hear my leak, sounds like water in my ears.  It does take time and it is hard to know what needs a dr and what just needs time.  I hope you feel better soon.  -zygy

[irislita]

Hi.what i read is that u can actual feel the liquid outside...it ll be wet or u devolop a liquid filled space which u will see.take it easy.the feeling of liquid running in the body is quite normal.this is recovery...really strange...and after showering it will be strange for a while...its a serious wound.