CSF leak

I am posting this question on behalf of my sister in Montreal.  She is 30 years old and has been suffering from severe and nearly constant headaches due to a CSF leak for over a year.  She has a pressure level of 0.  Three blood patches have been performed, with no lasting relief.  She has also had two operations at the Montreal Neurological Institute to patch the many leaks and tears spanning the area from C3-C7.  After the second operation more tears occured at the thoracic level within the vertebreal canal.  The CSF is leaking into the epidural space and is apparently inaccessible for operation.   Is there anything else the doctors can do?  Could her dura be deteriorating?  What are the long term consequences of such a leak?  

Thank you very much for your attention to this matter.

Sincerely,

Concerned Sister

[CCF Neuro[P] MD, RPS]

Dear Concerned Sister:

Sorry to hear about your sister. What caused the intial leak?-a spinal tap is the usual procedure that causes a spinal leak, but usually not at the cervical level.  So, I will assume that she had surgery for some reason at that level.  I am not sure what to say as usually the surgeons are good about closing the dura.  However, with no pressure there should be little leakage, but this would indicate that she is not producing CSF which is always occurring, so it just must be low.  Not knowing your sister's medical history, I can't say why she should have multiple CSF leaks.  Likely, surgery is the only procedure that will close her multiple leaks.  The long term things to watch for are infections and headaches, if the leaks remain.  I am sorry that I am not much help.

Sincerely,

CCF Neuro MD

[jennifer]

I was sadned to hear of your sisters plight.  I to suffer from continual CSF leaks.  There are pocedures to fix the problem such as facia patching or muscle patching.  There is of course a down side to these procedures such as a very long recover time (6 months).  The most important thing I can tell you is there is one thing that relieves the CSF pain and that is to drink plenty of coffee and high caffine drinks.  Something in the caffine stimulates the production of CSF fluid.  Here is my e-mail address if you want to share information  ***@****