Author Topic: CSF leak that won't stop  (Read 4170 times)

mykey

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CSF leak that won't stop
« on: May 31, 2007, 07:29:36 pm »
Hi everyone.  It's Mykey's wifey, Lisa.  Mykey's really having a tough time of it since his surgery 1 month ago.  He's back in the hospital for the 2nd CSF leak (this time internal)...they repaired it by stitching up his eustachion tube and putting in a EVD drain, but it continues to leak out of his incision area.  It was dry for 5 days, then 1.5 hours before they were going to clamp the drain, it began to leak again.  Has anyone had an experience where the leak just would not stop?  His surgeons have stitched and glued over and over...they have no more tricks up their sleeve.  I think the next move is a shunt, if it doesn't stop.

Any experiences would be helpful.  This must come to a resolve soon...we are going on 4 weeks total in ICU.  (2 weeks for surgery and 1st CSF leak, then home for 9 days, then back in going on 2 weeks for neurocephalus and now continuous leak).  Also, any info on shunts would be appreciated.  This is all new to me.

As always, thanks for your help and support,
Lisa
Diagnosed  1/20/2007. Right side AN 2.5 cm
50yr, guitarist for 35 yrs.
Married w/10yr old son.
Translab 4/26/07 at Emory University performed by: Dr. Mattox & Dr. Olson
Surgery successful!
Extended time in ICU due to CSF leaks.

TP

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Re: CSF leak that won't stop
« Reply #1 on: May 31, 2007, 09:11:57 pm »
Yes that happened to me. My AN was removed 6/5/06, 1st CSF leak about two weeks later, they put in about 4 stiches (that hurt - no novacane), head started leaking about a week later, went in for surgery to repair, got meninigitis and was in the hospital for 8 days, sent home with a antibiotic PIC line. Two weeks later, head started leaking again, went in for more stiches (about 6 and no novacane-even bigger ouch), a few days later head started leaking and was put in the hospital again for a lumbar drain. After two days head was leaking badly and they scheduled my second CSF leak. Stayed in the hospital 8 days total that time with the lumbar drain and slept sitting straight up. My head felt like they pulled my skin from all other to that spot and stiched me up nicely. Once at home, I slept sitting up (almost 90 degrees) for about two months then gradually lowered my pillows. No problems since with any leaks!
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

brasher

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Re: CSF leak that won't stop
« Reply #2 on: June 10, 2007, 01:07:34 am »
tp,
so sorry to hear that you guys are having a hard time.
i had a csf leak myself, it was very frustrating... i know how you must feel.
anyway, after glue and stitches, and more glue and stitches, they put in a lumbar drain for about 7 days.
the lumbar drain was the trick for me.
at the end of the tube was a little pump that pumped the csf fluid out.
by pumping the fluid out at the lower back, the pressure is relieved from the incision, therefore allowing it to heal and stop the leak.
apparently, there is a risk of infection anytime there is a leak, so please be patient.
god bless,
tony
6.5cm AN;   1/23/07
translab prceedure; house ear clinic; Dr. Slattery and Dr. Schwartz
facial nerve severed with complete removal of tumor.
gold eye weight;2/21/07-Dr Roberts
12-7 nerve anastomosis; 3/1/07, Dr Slattery
happy to be here; recovering well

TP

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Re: CSF leak that won't stop
« Reply #3 on: June 10, 2007, 08:30:18 pm »
Brasher, thanks. Great news this was last year, I am all healed up regarding my incision!!
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision