Anyone still dealing with persistent csf leak?

[CSF leak Mary]

an removed 2007 lost hearing left side- two leak repair surgeries, had been doing OK then started leaking again, had a vp shunt surgery in March, Neuro felt hydrocephalus was part of the problem, multiple adjustments to the shunt, shunt experience has been horrible, have experienced hearing loss in my only hearing ear a few days after the most recent shunt adjustment, Oto. feels it was overdraining, took a lot to get Nero. to admit could be shunt related, so Neuro readjusted shunt. So now I leak more with minimal level of activity, not leaking enough to collect for testing in the required period of time. Hearing loss in good ear not improving!!! Scary!!!  Beyond frustrated, considering a different hospital, looking for success stories...and support...tired.

[Jim Scott]

Hi, Mary ~

I'm so sorry to learn of your post-op struggle with persistent CSF leaks - but let me offer you welcome and the hope that others will soon add to the thread with their CSF leak success stories (we have those) and the hope that your CSF leak issue will soon be resolved.

Jim   

[kenneth_k]

Hi Mary.

CSF leaks are buggers aren't they.
I had one lumbar drain and two surgeries before it was sealed. I have no experience with shunts, but overdraining sounds plausible to me.

I hope you can get your problems fixed soon. The loss of hearing in your good ear shouldn´t be permanent. I experienced that too when I had the lumbar drain.

It sounds like a good idea to change to another doctor.

Good luck, Kenneth