Chiari and CSF Leak

In 2002 I was diagnosed with a CSF leak.  I learned to lie down when ever I experienced a headache and wait for the fluid to build back up and then I could get up and around for a couple of hours.  During this time my neurologist decided to prescribe prednisone to help control the pain from the headaches.  I was sent to Mayo clinic for more testing and confirmation of the diagnosis.  When Dr. Makri asked about the medication I was taking, I mentioned the prednisone.  He told me he wasn't happy about that and we began to taper back to get off the prednison.  I had several MRI's previous to being on the Prednisone and none mentioned Cerebellar Tonsils being descended.  

However, at Mayo, my MRI did show the cerebellar tonsil has descended.  While on the prednisone, which was for several weeks, the headache was masked or missing.  I didn't know when to lie down to have the fluid stabilize.  

After my 3rd blood patch the leak was sealed and the headaches left.  Then 3 years later I began to have symptom after symptom that was diagnosed in 07 as Chiari Malformation.  Dr. Di successfully operated on me in early 08.

My question is:  Even though Chiari is congenital, the MRI previous to the prednisone did not mention the tonsil descention.  Could the prednisone with it's masking of the headache pain and my remaining upright have been what caused the tonsil descension and the resultant Chiari malformation?

[selmaS]

Hi and welcome to the Chiari forum.

Since we r not drs we can not tell u a difinative that it happened that way, but what I can tell u is the CSF leak was most likely the root......may I ask what caused ur CSF leak, were they able to tell.

A bumpy car ride or a fall could cause ur tonsils to herniate.....but the imbalance of CSF could have lead to u having more symptoms.

Did u ask ur dr about this?

"selma"

[kathy811]

I had a CSF leak during my lumbar surgery last year that kept me in the hospital for 2 wks flat on my back and had to have a 2nd surgery during that time to patch the leak with fat tissue from my buttock. Shortly after I came home from the hospital I started having sx of what I know now to be Chiari symptoms. After 3 NL's and 3 NS's I have found the right surgeon to do the decompression. My surgery will be Sept.10. This surgeon told me that the CSF leak brought on my symptoms of Chiari even though I was born with it and have been asymtomatic all my life. So yes,a CSF leak will contribute to your symptoms.