csf leak not possible?

[Guest guest]

Hi everyone,

I had my appt. yesterday with my ENT. Again when I asked if it could be a csf leak his reply was that I would be his first patient with one. When I said that I believe I've had it for years, he basically mimiced me. We looked at the Ct scan of the sinus and he said he saw nothing that would lead him to think there was a leak. We spent quite a bit of time looking at how wonderfully he did the Lothrop procedure over a year ago. Findings were mild mucosal thickening in the frontals etc. and my left sphenoid was opacified. All he kept saying was I believe you have these headaches...blah blah blah. I burst into tears which is something I don't usually do. But he was basically saying...there's nothing I can do so my hope was completely dashed.

My neurologist thinks my headaches are from migraines. I have researched migraines. My headaches are nothing like the symptoms described. I don't ever get sensitive to light, ever. I don't even own a pair of sunglasses. For the most part my frontal pressure is not always associated with nausea. I usually get nausea etc. when I can feel huge pressure pushing on my ears. When do doctors start taking you seriously? When you crawl into their offices?

I've only taken pain meds the last two years of the thirteen years I've had the pressure headaches. I can't even consider working outside of my home. I am upright only 6-8 hours a day on average. I feel like such a burden on my family. I'm a bit emotional only because I came out of my acceptance stage and started looking for an answer yet again and my hopes were dashed yet again. My symptoms just in case someone has this or knows someone with it.

Pressure headache upon getting out of bed increasing in pain and pressure as the day goes on. Relieve when I lay down. Complete relief of pressure while chewing food. Never ever even 1 day without this type headache since as long as I can remember.

New headache that started 2.5 years ago after a frontal sinusotomy. This headache comes about 1 or two times a month. It comes on as a mild pounding in the back of my head. It can quickly escalate to a 10 pain level if I don't get horizontal. If I get horizontal before it reaches a 10 the headache will go away within minutes...completely while I am horizontal. If I wait till it's a 10 it may take up to 15 minutes to a half hour to go away completely. If I get up for any reason, the headache will come on full force and can reach a 10 in 5 minutes. So I lay back down and it goes away completely.

Thanks for listening,

Tami