Author Topic: CSF pouch under incision  (Read 115 times)

Michellebelle007

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  • Michelle Belle
CSF pouch under incision
« on: May 22, 2024, 03:42:41 pm »
I’m almost 3 weeks post surgery for my AN. I have a pouch at the top of my incision that goes from my temple into my ear that the doctor believes is CSF. It’s not actually leaking out, no dripping from my nose or ear or salty taste in my mouth, it’s just collecting under the skin. I have been on Acetazolamide for one week and haven’t had much success in drying it up. My doctor wants to keep my stitches in, he’s worried it will start leaking out. This is my second surgery for a regrown AN, so they took my facial nerve this time and I’m dealing with a paralyzed face on the right side also. A symptom is shooting pain from the jaw and that is happening from time to time but I don’t think it’s CSF related. Has anyone had CSF leak under the skin? What did you do to resolve it? I’m hopeful it will resolve and they won’t have to go back to repair it or get a shunt. I did have this same issue in 2018 for my first surgery but it quickly resolved in a matter of days after I was put on the same medicine. It seems to be smaller when I lay down and after sleeping overnight but then refills once I go vertical. I’m also getting pains from that spot spontaneously. Any advice is appreciated.
« Last Edit: May 22, 2024, 03:46:57 pm by Michellebelle007 »
diagnosed 3.5 cm AN Nov 2018
Translab. Surgery Dec 2018 partial resection
Proton Therapy Radiation Mar 2022
Regrowth 2.7 cm AN Feb 2024
2nd surgery May 2024 complete tumor removal with facial nerve removed on right, right sided facial paralysis
Awaiting July surgery for Cross Facial Nerve Grafts

donjehle

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Re: CSF pouch under incision
« Reply #1 on: May 27, 2024, 09:47:29 am »
Hi Michelle Belle!

I see that no one has yet responded to your message.  I haven't had surgery yet, so I cannot speak directly to your question about the CSF pouch.  However, let me make a suggestion to you:  Go to the ANA Forums Home Page (it may not work well in this thread).  Then in the Search field in the upper right side, type in "CSF" and hit your Enter key on the keyboard.  When I did that, I found 75 posts in the forums where someone had posted about CSF.  I don't know how many of these posts would be relevant to your situation, but my guess would be that some of them might be helpful for you.  At least it's worth a try.

Best wishes on your AN journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.