Eustachian Tube Obliteration to stop post-op CSF Rhino Leak Questions

[Jennifer1974]

I had my AN removed on Dec. 1st at UCSF in San Francisco and developed a post-op CSF Rhino leak a mid-December.  I ended up back in the hospital for an 8 day stint w/ the doctor's ending up doing another procedure called a mastoidectomy/ Eustachian Tube obliteration.  Prior to the development of the CSF leak I was feeling somewhat normal.  Now, I feel really dizzy and like my head is underwater.  I have this weird pressure sensation and my scalp around my ears seems to tense up and not relax.  It's almost like the compression headache feeling I had w/ the lumbar drain, but not quite the same.  Help!  Will this go away?  Has anyone else experienced this?  What is causing this?

I'm feeling really down.  I have had several complications.  I had a CSF leak from the lumbar drain after both surgeries and had severe spinal headaches with me ending up having to have two blood patches done.  Then the CSF leak from my nose.  I feel like my doctors don't explain things well enough.  They tell me what they're doing but not what side effects to expect or what sensations are normal.  I'm worried that what I'm feeling isn't normal and that something else has gone wrong.  Please, if anyone knows what this is, can you help me?

[leapyrtwins]

Hi and welcome to the Forum.

I've heard of CSF leaks, but what is a CSF Rhino leak?

Jan

[Kaybo]

Hi Jennifer and WELCOME to this site!  So sorry to hear about your situation and discomfort.  I'm assuming that this is where they close up your Eustachian tube & pack it?  If so, they did that with my intial surgery.  I am W-A-Y far out from surgery and had a LOT of complications (no CSF leak, though - the only thing I didn't have...well, beside death, ya know!) so I don't know if I can help.  HOWEVER, I do NOT have those headaches now so maybe  it is just going to take a little bit of time...you are VERY fresh out of surgery...your body has been under a LOT of trauma & stress!!  I'm certainly not a Dr. but I would say to give it a bit of time.

K  )
*guess I'll make my own Smiley!!*

[kiwi]

Hi Jennifer

I had a petrosectomy and blind sac closure op 8 weeks after my original surgery for a CSF leak. I had my middle ear, TM, OC and ear canal skin excised and removed completely. My Eustachian tube was then opened and blocked completely with Bone Wax and muscle from the side of my head, I then had the petrous temporal bone obliterated and replaced with fat and glue. It took a while to recover from this surgery but I don't seem to be suffering any headaches or head issues.  The side of my head is still very tender and I did notice my head caved in behind my ear. I'm sorry your suffering so much after your op, everyone seems to heal differently and people have different complications after surgery.  A leak is an awful experience and I can sympathise with you there, I leaked for 5 weeks before they could fit me in for surgery.  Maybe time will help in the end?

Jacqui

[kenneth_k]

Hi Jennifer.

I'm sorry to hear that you experience so much trouble from surgery.
I had a procedure similar to yours done on 7th december. Recovery is a lot more painfull this time. The incision site is more sore and initially, it hurt a lot in my ear when I burped.

Thing are slowly improving, and my doctor has promised me that things should be all right after 1-3 months.

However, if you have a feeling that something else is wrong besides "normal surgery side effects" - don't hesitate to consult you doctor again.

Best regards, Kenneth

BTW - CSF Rhino is short for Rhinorrhea and is when CSF is leaking through the nose. In our case it is actually Ottorrhea (through the ear) mimicking Rhinorrhea. CSF gets in to the middle ear and exits via eustacian tube down the throath and/or out the nose. It may be subtle/intermittent and only become apparant when straining or leaning over.