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CSF Leak

Posted by @meyer245 in Brain & Nervous System, Jan 16, 2012

I have recently had a blood patch for a continous head ache which was believed to be caused by low cerebral fluid pressure. The head ache continues and feels like a bruise below the skull behind left ear. Location of the leak has not been identified. I did have a fall about 3 years ago in which I hit my head. I had tingling and numbness around my eye after the fall. I continue to have the numbness, but also now have pain. About 5 months after the fall was the first sypmtoms of a severe headache and I went to the emergency room. (I had been complaining of 'sinus pressure' and pain before that). It has been three years of trying to deal with it. I was diagnosed with Breast cancer in 2010 and a happy side effect of the treatments for cancer was that the headache disappeared for several months. It came back with a vengence in December 2011 and at that point was diagnosed as possible CFS leak and I recently had a blood patch. The head ache persists, although it is less severe right now. Does anyone out there have similar continuous headaches that get better when you lay down and increase when up or later in the day?


Posted by @llaird, Jan 24, 2012

I share your problem. My pain begins behind right ear. This has gone on for 16 years. I finally found Dr. Reid Bullock in Tucson AZ who does a blood patch by inserting a tube in the epidural space then inserting the needle while ejecting blood and pulling needle and tube slowly down the epidural space. This is done under a flourescope so that he does not hit a nerve (which happened with other Dr.) He injects up to 20 cc. of blood or as much as I can tolerate since it is very painful and I have to be awake (though slightly sedated). I then rest for three hours in his office without moving to allow the blood to begin to coagulate in patches along the epidural space. After that I pretty much stay inactive for a couple of weeks so that the patches stay in place. He's been doing this for the past ten years. I had many patches at Mayo that were unsuccessful. Bullock has been my salvation. I still leak every 2-3 years but can live a good life in between. Dr. Mokri at Mayo Rochester believes that my spinal sheath weeps since the tests have never found a leak. Mayo Scottdale is working to develop a better MRI to try to find undiscoverable leaks.


Posted by @alexsimon, Feb 3, 2012

Hello - Unfortunately we at Mayo cannot give medical advice out over this site. But if you are interested in seeing a Mayo Clinic physician please click on the "request an appointment" link on the upper right hand corner of your screen. This will begin the process to be sceen at either MN, AZ, of FL locations.

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