Hello everyone,

I hope you remember me, my name is Kellie from the old forum. I had severe ear pain as my primary problem, and was diagnosed with TN. Went through steroid injections, meds, all helped very little. I finally went and saw a Neurosurgeon in July and had an MVD. I was bummed that I couldn't get on and get any info. due to the site being down. Well, it turned out that I had a compression on both my 5th and 7th nerve, kind of explaining why my pain was predominantly in my ear. The surgery was a success (no more of the horrible stuff and no meds), but I have had a bit of a set back. I have a CSF leak that was found Sept. 4, and I still have it. It was a huge fluid filled bump on the back of my head, near the surigical site. Now it comes and goes but is never as big as it was. My face is very swollen on that side as well, but it is not actual swelling as it doesn't respond to ice. The Dr. thought it might be CSF leaking into the tissues of my face. Anyways, has anyone here had a leak before? I am starting to become concerned as it has been some time now. I get headaches that are positional, quite a bit of pain on the back of my head, and although the Dr. says it has nothing to do with it, I have pain on and off in my lower leg. I was told its best if the leak will close itself. I am supposed to get an MRI next week. If anyone has any advise, I would appreciate it.

Hello there and great to hear from you. I personally do not have experience with surgery and/or leaks, however, I am very sorry to hear you have to go through this after finally getting some relief. Best of luck on getting this taken care of as soon as possible and with your MRI.

Keep us updated!

There were forum members who had CSF leaks after surgery. If you post the same question on the original Braintalk site - now up after its 3 month absence - you may get some answers. Good luck, it sounds painful and something that you would rather not have! Nancy