leak site and severity of HA

[Rooster427]

I have been diagnose with a csf leak that has yet to be found. I believe it may be high up in my neck but am not sure. My HA is bad but not debilitating. So my question is, if your headche is not as sever can you assume you are leaking higher up in your spine? If you are leaking form your lumbar area will your headache be worse? If it is worse why is this so? Is it because a leak lower on the spine pulls harder on the brain?! Let me know, this may help in being able to tell where leak is.

[forevan]

I have done quite a bit of research over the time I have had my leak (23 mo) and I have never seen any study (or even just review article) mention a corrleation b/t where a csf leak is located and severity of symptoms The only sure way to know where you are leaking is with a CT myelogram (but then again, not everyone will have there leaks show up on myelogram---my leak turned out to be relatively large but never imaged well for some reason) or possibly surgery. Maybe someone else has more/better info.

[CSFChallenged]

Hi Rooster,
I am one of the long term leakers here (spont. spinal almost 7 yrs). We haven't yet met but wanted to share my info from my docs. Although several of the famous leak docs have stated during the course of my care that it is more common for spinal leakers to have more debilitating headaches and symptoms than cranial leakers you can never really determine a leaks location based on this, because there are too many variables.

Someone with either a huge rent at T1 or a huge cranial leak that poors out their nose is very likely to be in terrible discomfort, as compared to a spinal leaker with one very small L4 leak that has escaped imaging. (don't get me wrong, that single spinal leak can be very bad too). A patient with 12 plus spinal leaks can be totally debilitated while a cranial leaker with a clearly imaged dural tear may still be working (although struggling to pull it off...).

So, your symptoms will depend on the size of the leak, number of leaks, location of leaks, your metabolism and ability to replenish CSF fluid, your physical activity level, general health, and hydration status etc., etc., etc.

There are no specific research papers that I know of that state the mechanism why spinal leakers do tend to have more debilitating symptoms, but both Dr. S and Mokri as well as numerous other neurosurgeons I have seen have said that the symptoms can be secondary to the downward pull on the spinal cord and brain stem. It's as if you pulled a plug at L4 and all the CSF is trying to flow out that opening in the lower spine instead of flowing past it and back up to the brain. A new flow gradient is created and unless you increase the pressure, the CSF will not be able to just flow past that hole without some of it leaking out. It's just physics(yuck remember those classes?) The loss of CSF pressure in the lower spine will then create a vacuum and the spinal cord and maybe even the brainstem will be pulled downward which is exacerbated by gravity and upright position.

So, although it might seem logical to assume that you might be a cranial leaker because of your symptoms, it is still best to have the whole workup done so they don't miss anything. I'd hate for you to only look in one area, only to find that it was somewhere else all along. Wishing you Godspeed to find and fix that leak!

CSFChallenged