csf leakagek

[comphibron]

I would like to hear from anyone or everyone who has had the AN surgery and had CSF  leakage and what was done to stop it.
Thanks

[rntiggergirl]

Hi
I had a CSF leak after surgery while I was still in the hospital. I had a spinal drain put in for 3 days to decrease the pressure so the leak would heal on it own. It worked.

Cheryl

[David707]

My case was similar to Cheryl.  Here is a copy from "Sharing My Story" posted a couple of weeks ago.  Hope it would help and Best Wish for you.

* 2nd Day after the surgery, spinal fluid leak was noticed whenever I leaned my upper body forward.  A procedure was done to drain the spinal fluid from my lower back.  This was to reduce the pressure in my brain and allow the leaking area to heal by itself.  The procedure was not painful at all, just needs to be closely monitored (stay in ICU for additional 3 days).
•   On the 4th day, the drainage was clamped to allow the brain pressure rise back to normal and keep monitoring the leakage.
•   After one more day of observation and be sure for no leakage, I was released from the hospital.

[DeniseSmith]

I had a CSF leak about six weeks after my initial surgery. I sneezed and ruptured the (for lack of a better term) lining in my brain.  I had fluid leaking from my nose, and I could not move my head hurt so bad. My doctor performed a second surgery repaired the leak, and re-did the nerve graft. I spent five days on my back in the hospital with a lumbar drain.  Most boring five days of my life.  My great, and wonderful sister came from TN and spent those days with me.  I am fine now. No more problems, other than the facial paralysis and lack of coordination with my left side.

[pigtale]

my daughter (16) also had a csfleak, after two weeks , she was still in the hospital, they wanted to do a backdrain too, but she didn't want it, so they pressed the liquor excess out in her neck and then without anesthetic they stitched her neck, after that the neurosurgeon told her to lay on her back for 24 hrs with pressure in her neck (a big roll), to close the wound. after that he said, you have to lay that way for another 24 hrs to be sure nothing goes wrong. she was on her back for 42 hrs total , and the wound was  healed.

[wanderer]

I had a csf leak from the incision 4 days after surgery.  Surgery was one week from the first surgery.   Bone cement and a new fat graft was used to seal the leak.

I ran in to other complications later but that did fix the csf leak.

[Frying2Knights]

Hey all

On my 7th day in hospital I suggested I was having a CSF leak from my nose. I was told it wasn't (the surgeons hadn't had one in 18 months allegedly) and that it was just certain nerves causing my nose to run.  I went home that day.
Four days later I was sure I was having a CSF leak and phoned the hospital, to be told it wasn't a CSF leak.  Luckily the following day one of the surgical team phoned me and asked that I go in.  I did and was told it WAS a CSF leak.

I had a lumbar drain put back in (plus a pressure bandage was reapplied to my head and I was put on antibiotics by IV to counter any possibility of infection).  I had this for about 4 days.  However, during that time it stopped working , on one occasion having come out, and had to be replaced.  After a very traumatic week I was allowed home again. I was on strict instructions not to strain or even move my head.  This lasted four months.  Four months of not being able to even look down at my hands - great fun!  This seriously impacted upon my recovery.  I haven't had a leak since but do suffer with severe chronic headaches, very stiff neck and shoulders, and fatigue.  I am now 15 months post-op.

A note for anyone facing a lumbar drain: I have a very low pain threshold for, and a correspondingly high fear of, needles.  The lumbar drain being inserted sure ain't pleasant but it's not as bad as you might think.  In fact on one occasion (out of three) a very skilled doctor inserted it and I hardly felt a thing!  Once it's in you don't feel it.