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This forum is for all who have questions or contributions concerning spinal headaches and spontaneous CSF leaks. Information in this forum is for sharing of general information only, and should not be construed as medical advice, which can only be given by qualified physicians with a personal relationship with the patient. This forum does not constitute any manner of doctor-patient relationship in any form whatsoever.

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Subject:		spontaneous CSF leaks
Name:		Sue
Date Posted:		Feb 14, 08 - 12:48 PM
Email:		A102586@aol.com

		http://deleted
Message:		I have had a headache for 3 months. My Dr feels that after many weeks of medication trials and tests, Depakote, Topamax,Cymbalta, Steroids, Caffeine,CT Scans, MRIs,and an LP. The tests were all normal except with the LP I had to be stuck 3 times. The first 2 tries were dry and the 3rd one was done very low in my back through a nerve into a sleeve. He did get a pressure reading of 14 but very little fluid. My Nuerologist feels that may not have been an accuret pressure because of going through the sleeve. So since I still have the headaches I had my first blood patch yesterday. 3 different caths were placed in the lower back all the way down to my tail bone. It was very painful and I am in a great deal of pain today. The headache did not lessen at all and is still there today. I really feel that this is a low pressure headache because I have all the symtoms. After standing and being in an upright position the headaches starts anywhere from 30 min to 1hr or less. It runs up the back of my head, throbbing, I have had neck pain and the pain makes me very nausious. Plus when I had the LP the headache came on much faster when I stood up but it was the same type of headache I have been having. Also when the Dr injected the last site with blood, pain shot right up my back to the back of my head (the same area that has been hurting)and I had the most terrible throbbing and I couldn't hear out of my right ear for a few min. My Dr said that a few patches may be required, I can't imaging going throught that again, and if that doesn't work he said something about sending me to John Hopkins for a spinal infusion where as an in patient they run a saline solution into my spine for 3 to 4 days increasing the pressure. I have been out of work since Dec 18th and I am on FMLA but time is running out. Have you heard of this infusion? Also if they want me to have another blood patch 1st how long do they normaly wait before trying another one? I don't know how much longer I can deal with these headaches....I DO TRUST MY DRS but would like to get someone elses take on what I have been dealing with. Thank you for any feed back you can give me.
Replies:
Re: spontaneous CSF leaks by Jordan Tannenbaum MD Pediatrics · Feb 14, 08 - 6:49 PM Re: Re: spontaneous CSF leaks by Sue · Feb 18, 08 - 10:48 AM Re: spontaneous CSF leaks by debi · Feb 14, 08 - 8:31 PM Re: spontaneous CSF leaks by Robin · Jul 27, 08 - 4:59 PM

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