Author Topic: CSF leak from incision  (Read 875 times)

kgs123

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CSF leak from incision
« on: November 15, 2017, 04:51:20 pm »
I'm sure this exists in the threads but it's too much for me to search through right now.

I'm 2 weeks post translab and have been drained 3 times in 24 hours (outpatient) for CFS leak. Today they took 20 ccs from the incision area and placed a tight compression around my head.

I understand everyone is different, but has anyone experienced this and had it be fixed long term by draining, without additional surgery?

Thank you.

ANSydney

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Re: CSF leak from incision
« Reply #1 on: November 15, 2017, 05:31:51 pm »
Most CSF leaks resolve on their own. Keep your head elevated, don't strain yourself, don't bend over to tie your shoe lace and don't blow your nose.

JLR

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Re: CSF leak from incision
« Reply #2 on: November 16, 2017, 04:45:06 am »
Good advice ANSydney. For the first several months I did not even pick up anything that might fall on floor for fear of leak. My surgeons told me no bending over.  I had zero leaks but complications from facial nerve but that's another topic! Hope the leak lets up. Stay calm. Stay upright. Make sure incision is sealed very good. My first week of surgery my head was wrapped very very tight. I'm sure that helped. Regards.

kgs123

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Re: CSF leak from incision
« Reply #3 on: November 16, 2017, 08:51:04 am »
Thank you. They put in a couple stitches where the leak was, to seal it up.

I'm still sleeping at an incline but do occasionally reach to the floor. I can stop doing that for a while based on your suggestions. Trying to stay calm is indeed difficult when recovery isn't going as planned.

kgs123

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Re: CSF leak from incision
« Reply #4 on: November 21, 2017, 04:30:05 pm »
Update:
After a week of multiple draining with a syringe (40-60ccs each time) of various spots on my AN side, the Dr has prescribed medication to reduce the amount of CSF I'm producing, hoping it'll reabsorb.

Anyone have experience using meds to reduce production?

ColleenS

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Re: CSF leak from incision
« Reply #5 on: December 14, 2017, 12:41:06 pm »
Hi there. I was on a medication to help reduce the amount of fluid production for about 3 1/2 months. As you can see in my storyline I did have the CFL surgery. I had lots of swelling whenever I tried to wean off of steroids. So I was on steroids and the water pills for months. How are you doing now? How large was your AN? What kind of surgery, and where did you have it done?
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

kgs123

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Re: CSF leak from incision
« Reply #6 on: December 14, 2017, 02:16:27 pm »
I ended up having a second surgery for the CSF leak, a month after my original translab - 18x13x9 - and two weeks after the start of the leak. The meds did nothing to quell the production of fluid. I was at Duke (Durham, NC) and had fantastic care and great doctors. I guess I am just part of that percentage that doesn't heal well at first. I had felt fine before the giant goose egg, walking 3x/day of .5-.6 mi each time. Then the bottom fell out and I was a dizzy mess with a hard mass at both the top and bottom of my incision.

Now I am 2 weeks post leak fix procedure. I appear to be doing well. The incision is a bit messier this time, but does not appear to be leaking CSF. I am so appreciative for the folks on here!

kgs123

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Re: CSF leak from incision
« Reply #7 on: December 23, 2017, 07:07:25 pm »
Now that I am 3.5 weeks after my second surgery I have a giant goose egg on my AN side. Dr isn't worried unless I spring a leak but it's concerning to me nonetheless. How long did it take anyone for their goose egg to go away? Thanks.

ColleenS

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Re: CSF leak from incision
« Reply #8 on: December 31, 2017, 09:25:42 am »
I never had a "goose egg" - my leak sprung from my nose. Good luck and be sure to rest.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

 


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