CSF Leak

[Lizard]

Hello
I had AN surgery 11/2008, by suboccipital approach, but unfortunately I had a CSF leak (through Eustachian tube and down my throat) and was required to have a mastoid obliteration to patch the mastoid bone and stop the leak.  So basically I had a translabrynth surgery as well, where they entered right behind my ear and patched the mastoid bone.  I was in the hospital for a total of two weeks.  16 months later am still suffering with terrible headaches and some balance problems, but they were able to save most of my hearing. I do however have tinnitus, sounds are tin-like and I do not pick up higher pitched sounds., but those are the least of my problems.  Has anyone had a similar problem and can you offer insight into your symptoms after the CSF leak was fixed as well as recovery?
Thanks,
Liz

[msmaggie]

I had a CSF leak after retro surgery and ended up getting meningitis, requiring another hospital stay.  My leak was at the incision site and never leaked out--just ballooned out as a bulge.  It healed after I had a couple of spinal taps and took medication to lower the pressure in my head.  I am so sorry you had to have addtional surgery, but am happy to hear that your hearing survived to some degree,  Quite a process, isn't it?  The headache issues did improve slowly but surely, and now I rarely get any.  Hope you continue to heal and get stronger!  It sometimes takes awhile to get things back to some semblance of normal.  Hang in there.

Priscilla

[staypoz]

Hi, Liz.  I had a CSF leak through my ear post suboccipital surgery.  I had a fat graft to repair the leak.  I have headaches, but I attribute those to the first surgery, not the second, although having a second surgery in the space of a couple of days probably didn't help things along.  I have very, very occasional tinnitus.  Have you seen a doctor about your headaches?   

staypoz     

[Lizard]

Seen quite a few dr's about the headaches, but none were really able to tell me what was going on.  I'm having trouble staying positive...can you tell?

[staypoz]

I know it's hard sometimes.  The head pain can be debilitating.  Like a lot of other folks with headaches, I have seen a variety of doctors and had a variety of treatments.  It was very hard the first couple of years, but the frequency and severity of my head pain slowly began to change and continues to change, even 6 years out.  Hang in there.  There are a lot of us headache sufferers on the forum who know what you are going through and are pulling for you.

staypoz   

[Lizard]

Thanks I know, that's why I'm here!