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View Full Version : CSF leak & hydrocephalus?


Elizabeth S.
06-24-2008, 09:56 AM
Hi y'all, I posted this in the New Visitors section, and didnt get any replies yet, so I thought I might post it here and on the CSF leak forum too. Thanx! E

Hi! I'm a newbie wondering if anyone has similar experiences or wisdom for me. I've got a CSF leak into my L ear. I've got neurotologist and neoursurgeon on the case who deal with CSF frequently enough for my comfort. I'll be asking them some of these questions, but thought I'd do my homework first by asking you too. The question is if I also have hydrocephalus or just congenitally large ventricles. I've been asymptomaic for hydrocephalus (at least for the past several years--yes, maybe since the leak started in maybe 2002. Before that I did have some headaches, but no other problems). If I dont need a shunt, I dont want one. But I also dont want the surgery to repair the leak to fail because of hi pressure. I had a spinal tap last week that indicated normal CSF pressure, but with a leak, we all knew the reading could not be fully accurate (a hi pressure reading, however, would make us all think shunt).
Do ventricles expand and contract rapidly? That is, if my spinal tap showed normal CSF pressure, and my MRI and CT show enlarged ventricles, then can I hope that I just have asymptomatic (and non-problematic) ventriculomegaly (Is there such a thing)?

BTW, after years of a drippy ear (and being told that it wasnt CSF because the beta-2-transferrin test results were *mostly* negative :mad:), my CSF leak was identified (by a cisternogram) after I got bacterial (pneumococcal) meningitis last month from an ear infection (which I got because I accidentally got water in my ear showering and I have an ear tube--to drain the liquid we now know is CSF).

AND all this is in the context of surgery in 1996 to remove a juvenile pilocytic astrocytoma (a benign tumor, thank God) from my brainstem (surgery site and tumor site are not near the current problem, so my surgeon thinks this is just by chance--lucky me). The tumor was found following a subdural hematoma (probably a vessel serving or in the tumor). I recovered fine, but a year later started hearing a bruit and they found a dural a-v fistula and at the time mild protein s deficiency (which made me more likely to clot, explaining my partially thrombosed left jugular). Havent had problems with the fistula or the blood condition since then. But I have masses of MRIs and CTs (and have been thankfully anal about getting the films to keep myself), all of which show elarged ventricles, which my doctors (not my current doctors--I've moved since then) did note, but at this point all I can discern is that as I was not having any hydrocephalic symptoms, and the ventricles were staying the same over time, the determination was to leave well enough alone.

Well, that's enough to start, except I was just diagnosed with autoimmune thyroiditis (although with all this going on, I havent started to take the medicine with is a synthetic hormone to replace what's apparently missing), AND I think of myself as a basically healthy person.
Thank you!!!
Elizabeth S

Lauren88
06-24-2008, 02:29 PM
Hi Elizabeth and welcome

Man you've been through the mill! :eek:I don't know anything about CSF leaks, but there are many knowledgeable people here so hopefully someone will be able to give you some input soon.

Take care and I hope you can get resolution ASAP

Elizabeth S.
06-24-2008, 10:07 PM
Thank you! I hope so!

Nat Hyland
06-24-2008, 10:28 PM
I have made a similar reply to another relatively new member who questioned whether it was worth gettting a shunt. What I basically said was, if you have noticed your headaches or other symptoms (vision problems, nausea) are getting worse, then maybe you might have to reinvestigate getting a shunt. Some people DO just have naturally large ventricles, but with your history, I would suggest that yours are not necessarily without cause.

Put it this way, I wouldn't be putting up with headaches if I could do something about them.

Nat.

Elizabeth S.
06-26-2008, 10:01 PM
Thanks Nat. The weird thing is I dont have headaches now. i fear this is because my hydrocephalus is being "treated" by my CSF leak. My own body found a way to normalize its intracranial pressure by finding a leak. And if I fix the leak, the pressure will go up again, causing headaches etc and maybe another leak. I'll hope this isn't true, and that I just have big ventricles and a leak, and that's that.

TDB7942
02-08-2011, 12:17 AM
Similar problem with my 8 year old. Diagnosed with Unilateral Hydrocephalus of the Right Lateral Ventricle, but all headache symptoms went away and she was released without a shunt. Had severe stomach pain, racing heart, sweating, hearing loss, etc. for 3 months after she was released then her ear started leaking "water" and the stomach symptoms went away. What I would consider a poorly done CSF test (smearing ear was on a glucose strip) was said to be negative but as far as I am concerned non of the watery liquid was tested. There is so much more to the story but, yes, it sounds like we have a few things in common. What did you decide to do? Is anyone else experiencing these combinations of symptoms?

tuk4tope
02-10-2011, 11:09 AM
I have NPH at age 56, shunt installed 6 mos ago. I have killer headaches all the time. The surgeon and CT check out "normal". appointment is set for neurologist next week. PCP suggested 1000mg acet, alternating with 1000mg Ibu, alternating every three hours. So I am destroying other parts of my body for just a tiny bit of relief.

LIZARD
02-10-2011, 11:49 AM
I have NPH at age 56, shunt installed 6 mos ago. I have killer headaches all the time. The surgeon and CT check out "normal". appointment is set for neurologist next week. PCP suggested 1000mg acet, alternating with 1000mg Ibu, alternating every three hours. So I am destroying other parts of my body for just a tiny bit of relief.

If you're really having severe headaches, your PCP's suggestion is laughable. Tylenol and Advil will do NOTHING for them. Get an MRI. It can see what a CT can't.

Good luck!

LIZARD :)