Hopkins appointment update

[jimc]

I saw my ENT at Johns Hopkins yesterday. The plan was to do a hearing test, then have me lie on my left side for an hour, then do the hearing test again. If the conductive hearing was much worse the second time, that would indicate that CSF was the problem. If the neural hearing was worse, that would indicate that my symptoms might be caused by nerve damage.

Two days before the appointment, I started tasting CSF again; I swallowed it for hours. It also came out my nose once on Sunday. This relieved a lot of the pressure in my head, and magically, I felt much better. I was able to be up and about for several hours on Sunday; the previous 10 days, I had only been able to sit up for about 10 minutes at a time before being forced to lie down due to extreme head pain.

The downside of this CSF flushing was that the two hearing tests showed no difference in my hearing, since there was little or no fluid to pool in my ear when I lay on that side. I'm going back in 2 weeks to repeat the two hearing tests. Given the cycle of fluid build-up/release (accompanied by feeling awful/feeling better), it's likely that in 2 weeks, my ear will be full of CSF.

And this repeating cycle has changed the doctor's mind about my leak. Last time I saw him, the CSF had just flushed and my hearing was pretty good, so he said I was no longer leaking. Now, he agrees that I am still leaking. What he can't figure out is why the CSF builds up instead of going down my eustachian tube continuously. He's referred me to a neurologist at Hopkins. I have no idea how long it will take to get in to see him; I have to send him my most recent CT scan and wait to hear back from him. The doctors at Hopkins seem very good, but boy, does it take a long time to get an appointment.

Jim

[Edward]

Hey there Jim,

Great to hear from you. Thanks for the update. I've been wondering about you. I will be anxious to hear how your next test goes so please update us right after that one.

For what it is worth, I notice somewhat of a daily cycle with my ear fluid. It is best in the morning and then gradually the ear pressure gets worse as the day wears on. It is almost like laying down allows the fluid to drain out of the ear and then it gradually oozes back in during the day. I am not sure why this happens but it does seem to be my pattern.

Interestingly though, sometimes when I have had the most noticeable leaking I have had very little ear pressure - rather, the fluid just passes through the ear. This makes me think that maybe if there is just a little fluid in the ear it may just sit there rather than draining down the eustachian tube - thus causing ear pressure. But, all I have is theories right now!

Keep me posted Jim. As far as I can tell, there are only three of us here with CSF leaks into the ears - you, me (although I am undiagnosed), and GingerLox. If I am missing someone else please let me know. (By the way, I wonder how GingerLox is doing.)

Take care....Ed.

[jimc]

Ed, I think your theory on the leak volume and where it goes may be on target. I've kind of noticed the same thing - the more leaking I feel, the more likely it seems to end up in my throat right away.

On your other observation, my symptoms are exactly the opposite of yours. I wake up every morning with more pressure in my ear. The fluid seems to pool in my head/ear when I'm lying down even though I sleep with my head on a big pile of 4 pillows. As the morning passes, the pressure usually lessens a little. This effect was more pronounced when I had the LP shunt in. As the day goes on and I get more tired, I tend to feel more pressure.

Hang in there, Ed.

Jim