CSF, dripping cerebellum and recomendation for future action

[wmayerhome]

After suffering from progressively worsening headaches for five years and deteriorating coordination, sleep disturbances, fatigue and nausea, an MRI in December, 2005, indicated that my brain had sagged to such an extent that the "tonsils" of my cerebellum were sagging into the spinal opening in the cranium. The neurologist believed this was caused by a csf leak. Prior to the MRI results being received the neurologisy prescribed Prozac and the headaches almost immediately ceased. A June, 2006 MRI indicated that the condition had righted itself with my brain and the cerebellum floating again. Apparently the csf leak spontaneously sealed. The December, 2005 MRI image and my symptoms suggest a condition similar to "Arnold Chiari Malformation", although I am told this is a congenital condition. I am currently feeling much better all around, but I never want those symptoms to return. My local neurologist has scheduled me for a return visit in September and told me to contact him immediately if the headaches return. What else should I be doing now? How do we know that the leak hasn't only slowed and not stopped? Is there a neurologist in the New Jersey, New York City or Philadelphia area with experience with cerebrospinsl fluid ("csf") leaks and the resultant "sagging" of the brain? Or should I visit your facility (and maybe the rock and roll hall of fame while I'm there)? Or do I just wait and pray?

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. The history and symptoms you describe suggest you had a spontaneous CSF(cerebrospinal fluid) leak, causing intracranial hypotension.  This usually causes a postural headache (a headache that worsens with upright posture and is relieved by lying down). In the chronic stage, intracranial hypotension can lead to "brain sagging" and loss of CSF spaces.  This causes an Aquired Chiari malformation (different than the congenital kind), that often goes away with the CSF leak is repaired.  The sagging of the brain causes the symptoms of headache, nausea, vomiting, ataxia (balance problems), thought problems and/or bowel/bladder problems. The diagnostic test of choice is an MRI scan of the brain with Gadolinium (GAD) contrast.  The characteristic findings are enhancement of the Dura (brain covering) with GAD and decent of the cerebellar tonsils to the level of c1/c2.  The next test should be a CT myelogram to identify the area of CSF leak with 2-5mm cuts through the entire spine.  Leaks are often due to an arachnoid diverticulum (out pouching of the brain/spinal cord covering).  These may seal spontaneously, may seal with a blood patch (blood injected in the CSF clots in the leak) or may require surgery to repair the leak.  After the leak is repaired then the GAD enhancement of the Dura goes away and the brain "re-floats" back to a normal position. It is encouraging that your leak sealed on its own.  There is a chance it may leak again, but if you are headache and symptom free I would recommend a follow-up MRI with GAD contrast in 6months-1 year.  If your headaches/symptoms return, then you should have an MRI right away, and then have a CT myelogram to determine the level of the CSF leak.  It sounds to me that your local neurologist is doing a good job, and I would continue to follow with him.  If your symptoms get out of control and you would like to go to the experts in the field, the person with the most experience in your condition is Dr. Bahram Mokri at the Mayo Clinic.  I hope this has been helpful.