Over the last yr I have been dealing with debilitating headaches and neck/head muscle spasms. 8/09 I had C5-6 fusion and things got better for about 6 wks then absolutely horrific pain and spasms started where I could not be in an upright position and no meds helped and I was then diagnosed with Chiari Malformation and I had surgery 12/09 to correct that and things got better again but 03/10 my world fell apart again with severe headaches that start around C2 and go up and over my head and the spasms take hold so fierce that my head rocks back and forth. I have had numerous tests and procedures-Myelogram which came back negative, facet injections in my neck which lasted only a few days, epidural blocks which only lasted a few days but all of my doctors (Pain mgmt, Neurologist, Neurosurgeon) believed that I had a CSF leak b/c I had all of the warnings and signs so I underwent 2 blood patches 5/10, 6/10) and got my life back but it only lasted about 2 months and once again the bottom fell out in mid July. Last week my Neurosurgeon ordered a Cisternogram and that came back negative but I was told the pressure was very low but no leak and no relief. All of the doctors were shocked that there is no CSF leak b/c I am textbook for the symptoms. For about 48 hrs after the Cisternogram and Myelogram I felt better which we believe is b/c stuff was injected into my spine to give the brain some bouyancy. I am wondering if you can CSF headaches with no leak but low pressure? and what causes the pressure to be low? what is treatment? is it blood related? and can you recommend the next step in the process so I can get my life back. return to work and get out of the recliner (which is the most comfortable position). I know its a lot of info but I am a complicated case.
Hi..Chiari surgery helps slow progression, but once u have chiari u will always have chiari...hopefully not the symptoms u r dealing with at present tho.
Yes, low pressure can cause similar issues as high CSF pressure.
Chiarians are told to drink plenty of water to help with the imbalance of fluids.
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