Long term CSF leak causing progressive damage?

[timetowinarace]

Hi. I'm 38 yr old male with a 14 yr history of fatigue, memory, concentation, weakness, tremor, nausia, light/sound sensitivity, headache, dizziness-altered feeling, a draining sensation in right ear, no smell or faint foul smell and others. Dx'd in june with PCS from a closed head injury in '91. Was hospitalized at that time for PCS but it wasn't considered again untill recently.

My concern is that my condition is getting worse. I know that MTBI is not/can not be progressive. I am in the process of confirming a CSF leak into my right middle ear. I have clear fluid there with no sign of infection or other cause. At this point it is just collect and test.

Few would think a leak is possible for 14 yrs. I was told I would be in VERY bad shape right now. I'm not really doing well. Is it likely that a leak is causing my symptoms to be progressive? I'm quite sure it's there. I'm hoping that fixing it will relieve many of my symptoms so I can get on with my life.

[CCF-Neuro-M.D.-PW]

CSf leaks can persist for long periods of time, and tend to result in an increased risk of infection or recurrent meninigitis, or low pressure headache syndromes with increased headache on standing. Your above description of symptoms doe snot seem to fit, therefore be careful to causally assocaite the two, if a spinal fluid leak is detected. There are imaging tests that could detect a leak such as a nuclear medicine scan, or biochemical testing of the fluid in your ear if it is collectable.

Good luck

[Citizen T]

Do your symptoms improve when you lay down or drink caffeine?

[timetowinarace]

I have allot of fatigue so when I lay down, I sleep. When I sleep for a little while my headache is reduced. When I sleep all night my headache is usually gone. If I wake with a moderate headache I'm going to have a very bad two days to a week. I drink a pot of coffee every morning, 12 cups, then all the fluids I can through the rest of the day. If I lay down and don't sleep for awhile then my head hurts less but still hurts. My eyes hurt, and my neck is stiff. Pain killers hardly take the edge off. Vicodin, Oxycodone, Morphine and anything else is useless. My tinnitus is now constant. I havn't heard quiet for I don't know how long. I have fewer hours of lucitity than I have of a drunk/drugged hard to explain feeling. Though I'm well grounded in reality and can function, things are different. Nausea. Meds are Topamax 25mg 2X daily  Wellbutrin 150mg 2X daily  Ritalin 20mg 3X daily

[fcar]

I too have been suffering for a long long time with what I believe is a CSF leak.  Doctors either dont seem to listen or pass it off.  I have had tests and am supposed to be going for another test to test for CSF.  It is strange, I see problems with MRI and first csf test to which doctors tell me I am wrong. The odd thing is though when I point out what I believe to be the problem areas on my exrays each doctor I have gone to has told me it is a different thing.  WHich makes me think even more they are wrong.  On my MRI I have some white spots that showed up with contrast.  I have been told that it is thickening of the skull, a vein, a nerve, a major artery, an artifcat, and that I probably moved my head during the test or was wearing an earring (which I definelty was not).  I am not sure how each doctor can say such different things.  It doesnt make sense to me, shouldnt they have at least the same anwers.  But they dont, which makes me belive even more they dont know what they are talking about. My gut tells me (plus the way my head feels)  I am right.  I also have a draining sensation going into both ears to which doctors tell me its impossible to feel the fluid draining.  I know excatly how you feel.  I also have constant headache and ringing in the ears, also same age.  I keep going to doctors hoping someone finds my problem.  I think you need to keep going till someone listens.  I am hoping this next doctor helps me.  At this point I have little respect for the doctors especially when they tell you, you cant be feeling what you are feeling.  If you believe you have a CSF leak than I am sure you do.

[timetowinarace]

Yes, I have been told it is impossible to 'feel' draining from the middle ear. More than once. So I seldom asked about it again. But after 14 years and many negative psych evals where I was advised to see physicians I have decided it is not impossible. A little research and the medical literature confirms a feeling of drainage in some patients with leaks or infection. Even the last GP I went to said he had not heard of anyone feeling it though he did say he couldn't personaly know if I was or not. Having seen fluid in my ear and no sign of infection he refered me to an ENT. Here's how I know it's a draining feeling and not a twiching or anything else. When I feel my ear actively draining (cause the feeling comes and goes) the only way I can get it to stop is to hold my nose and mouth closed and blow out. Like poping your ears on a plane. My left ear does nothing. My right ear fills up with more fluid and some air. The draining feeling stops but my ear feels full and the fluid sloshes around when I shake my head. (wich I don't do much cause it hurts my head) After a minute or so the fullness is gone and the draining feeling starts again. Repeat as desired.

[fcar]

hello

responding to you again.  I know when it is draining and when it isnt. That is what I keep trying to tell the doctors most think I am crazy. I also feel the fluid moving (but both sides)  I also feel the fullness.  It is also in the back of my neck, which gives me the same feelings as the ear crackling.  I dont know why these doctors cant seem to help me plus fail to believe me.  I do know what you are going thru and it is horrible.  I also cant move my head around a lot becasue it makes my head feel that much worse.

[no_hands]

A couple months back I posted about popping and squishing sounds coming from the back of my head. Although I've slowly gotten better and become less lethargic, I did do a lot of research during the time I was seriously ill. There are cases of people who have an extremely thin bone between their inner ear and the CSF fluid in their skull. In this case the fluid will actually leak into your ear.

I don't know if this also means that your leak would easily plug up without an operation.

I can't remember what it is call but look into it guys.

Good luck.

Joel.

[timetowinarace]

Spontanious leaks are/were considered rare. It seems to be less uncommon than originaly thought. It can happen in the ears, sinusus, or spinal cord but spinal cord seems more likely and harder to detect. Traumatic leaks often do heal on thier own but it is less likely for congenital/spontanious leaks.