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low CSF pressure with no leaks

I had 4 CSF leaks at the L1,L2,L3, and L4 levels of the spine. I had a blood patch in August 2009.  I've still been having headaches nonstop since then. In Nov. I finally got my CSF pressure was checked and it's still extremely low. The Interventional Radiologist couldn't take any fluid to test. I've had a MRI, CT Myelogram, and Cisternography testing all showing no leaks. I've tried taking prednisone and caffeine. Neither have helped so far.
      What else could be causing my pressure to be low, and what can be done to fix it? I've been in pain so long and daily think I might be better off dying. I don't know how much longer I can live like this. Someone, anyone please help!
3 Responses
1093617 tn?1279305602
Thank you for your question. Although without being able to examine you I can not offer you the specific advice on diagnosis and treatment that you need, but I would try to provide you some relevant information about your health concern.

CSF leak or spinal headache usually resolves within few days or week as many of the causes of leak go away on their own after a few days. Complete bed rest or blood patches for several days are usually recommended. Therefore, I do not foresee your continuous headache even after 6 months is due to CSF leak. Other possibilities like migrainous, cluster and tension type headache that may occur after an injury and need to be evaluated thoroughly with the help of a neurologist here. Migraine like headache can be throbbing, one sided of face & head and preceded by aura (starts with blurred vision). Cluster headache may appear as burning, explosive in nature and tear appears from eyes. Therefore, it will be best to consult a neurologist to find out the nature of headache in order to start the appropriate treatment. Hope this helps.

Avatar universal
My spinal pressure has been tested and it is still low even in the absence of any leak. The testing also revealed that the fluid is draining properly. The only thing left to investigate is the production of fluid. I want to find out what can cause low production of spinal fluid. I am seeing a neurologist at the University of Michigan.  I don't see him again until the end of April which will be a year since this all started. Thanks for any insight.
Avatar universal
The above dr needs to return to school. I have had a leak for 5 years. I went to the Mayo and saw dr Mokri. No fluid reaches the basel cisterns and my brain is sagging. I live on my back. I pray for healing everyday.
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