How do you find a Doc that knows something about CSF leaks in the head?

[Edward]

Hi Everybody,

I'm fairly new to this message board. I joined because I suffered a skull base fracture about two months ago and since then I have been having what I believe to be a low-flow cranial CSF leak into my ears. I literally feel the fluid dripping or oozing into my ears and then dripping down the back of my throat. I cannot get any recognition of the problem by the doctors because I cannot obtain fluid for testing (because it just drains down my throat). I have seen two neurosurgeons locally but they do not seem to know a lot about CSF leaks. They seem to be very aware of high-volume, obvious leaks resulting from trauma but they do not seem very "up" on lower-flow, persistent CSF leaks. So, I am thinking that I may need to travel to find a doctor that deals with these leaks. So, my question is this: how does a person like me find a doctor who actually deals with this type of leak? If any of you with head leaks have found a good doctor that knows something, I'd sure like to hear from you.

-Thanks, Edward.

[PainInTheNeck]

Hi Edward...

I am so sorry you are still suffering. In answer to your question....the Doctor who is reputed to be the best in csf leaks is a neurosurgeon at Cedar Sinai Hospital in Los Angeles. His name is Wouter Schievink. I called his office directly and found him and his nurse to be very kind. If he is not an expert in the type of csf leak that you have then I feel sure he would know who is. If you google his name..you should be able to find his contact information but if you have any trouble finding it then please let me know.

Best wishes to you Ed. I will be hoping to hear that Dr. Schievink was able to help you.

Shelly

[Edward]

Thanks for the tip Shelly. That would be a bit far for me to travel since I am more in a midwest location but, like you say, perhaps I will call them to at least get a recommendation on who I could see.

I just keep hoping this thing will heal on its own. I keep reading about how post-traumatic csf leaks (especially those into the ear) almost always just heal on their own. That sounds like a good plan to me - if only my body would cooperate! I have had some type of lupus-like autoimmune disease for the past several years and I am wondering if maybe that is slowing down my healing process. (I thought it was bad dealing with the autoimmune. Now I have to deal with that and this new problem. Nothing like multiple health problems to make life interesting!).

Always nice talking to you. Have a great day.

-Ed.

[ingrass]

Hi Ed,

You may wish to make an appointment with Dr. Bahram Mokri at the Mayo Clinic in Rochester, Minnesota. He is my neurologist and although I am seeing him for other reasons, he is a well respected authority on CSF leaks. He is also a very nice person.

You can Google his name and read some of his articles.

Best of luck.

[Edward]

Thank you Ingrass. I had heard of Dr. Mokri and I think I may try to see him since a trip to Mayo is more "doable" for me than a lot of other places.

Have a great day!