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Spon. CSF Leak-Headaches
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Spon. CSF Leak-Headaches

I had a spontanteous CSF leak from a tiny hole in my sphenoid. I realize this is extraordinary rare. The leak, unfortunately, led to bacterial meningitis. Fortunately, the leak could be repaired endoscopically. The problem is that I continued having headaches in the weeks after the meningitis and the surgery. Last weekend the headaches became intense, I developed a slight fever, and was hospitalized. During my hospitalization they performed an MRI and a Lumbar Puncture (my fourth in the the three months since I first fell ill), and both came back clear. Since the Lumbar Puncture I've experienced intense, severe pain that actually manages to rival the meningitis headache. It is excrutiating. This has been going on for five days now and I can't get in to see a neurologist until Monday afternoon. I'm out of my mind with questions. Any insight would be greatly appreciated.
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Ask your doctor if there is a possibility that one of the lumbar punctures left you with a leak and low CSF pressure is what is causing the headaches.  I've had 8 LP's in 7 years, and just had my second spinal blood patch yesterday.  The first one really seemed to help my headaches for about 7 months.  I will know more about the 2nd one in 72 hours.  They do sometimes need to be repeated 2 0r 3 times.  Good luck - I had viral meningitis, and I know how excruciating these headaches can be.
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Has anybody advised you to drink lots of caffine.  When I assisted with taps we always told our patients that.
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I have several things going on.  For close to 25 years I have had  recurrent numbness in the left side of my face and midline through the left side of my tongue and oral cavity.  I was dx. with temporal lobe seizures about 25 yrs ago with a "scar" on my left temporal lobe.  At age 22 mo. I was admitted with "virus X" with about 105 fever, total flaccidity of my left side for several weeks.  Now I am told they see no seizures on EEG (even 24Hr. one ten yrs ago.  BUT, at the 25 yr point, I was having frequent "episodes" and put on seizure meds.  They have discontinued the meds and now I may have ab "episode " a couple of times a month.  Last EEG -, but Dr. did say could be very mild and not now capturing episodes.  New addtional problem, since June 2009 started with metallic taste in mouth and severe burning tongue.  Saw Rheum. in Sept. w/ dx. Sjogren's.  On Pilocarpine and Zylocaine Viscous.  Over this time since June metallic taste turned to EXTREME salty taste 24/7 up til now 3/10.  Also with severe burning in mouth due to what feels like liquid coming from ? salivary glands again on left side of face.  Tongue can get very red during this time, entire mouth with severe burning and out to skin on outer corners of skin by mouth.  Some peeling of tissue in mouth.  ?chemical burn.  Some of this is totally unbearable, worse in last few months.  Have appt w/ endocroniologist also at request of ENT w/ neuro, definately feels all of this also has something to do with cranial nerve problem.  Could any of this, especially since June, have been a very slow CSF leak?  Seems like I read 1 report that said my ventricles seemed smaller and another with mild hydrocephalus within my 25 yrs. I've spoken about. Also now with short term memory loss,. can be playing cards and forget already who bid or what trump is.
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