Author Topic: CSF leak prior to treatment  (Read 995 times)

Flo2009

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CSF leak prior to treatment
« on: October 04, 2017, 01:04:57 pm »
I am new to this forum and have so many questions but I'm going to start with this one because I have not seen any discussions about this.
Has anyone experienced CSF leakage prior to treatment for their AN? I see a lot of discussions about leakage post operative.
I'm just wondering if this is another symptom of my AN or a separate issue altogether.
Thanks for any insight you can provide!

ANSydney

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Re: CSF leak prior to treatment
« Reply #1 on: October 04, 2017, 03:50:28 pm »
A CSF leak is when the CSF leaks past a cut that was made to access the brain. I would say that it's impossible that a CSF leak would occur before surgery.

Flo2009

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Re: CSF leak prior to treatment
« Reply #2 on: October 04, 2017, 09:49:34 pm »
Actually, spontaneous CSF leaks are not uncommon. While there are often obvious causes such as surgery or trauma, I will quote Dr. Ian Carroll here: "It is often mysterious where the leak is and what is causing it."  I was just curious if anyone with AN has experienced this prior to surgery.
CSF leaks cause a few of the same symptoms as AN. Headache, nausea, and tinnitus.

ANSydney

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Re: CSF leak prior to treatment
« Reply #3 on: October 05, 2017, 04:16:43 am »
It looks like spontaneous CSF leaks do occur. According to wikipedia, at the rate for 5/100,000. So 20 times rarer than an AN, which is rare enough. Thanks for updating my database Flo.

Flo2009

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Re: CSF leak prior to treatment
« Reply #4 on: October 05, 2017, 01:58:22 pm »
Anytime, Sydney. I wasn't aware of the statistical rarity, so thank you!  :)
Prior to my NA diagnosis, I suffered from debilitating migraines. I have a close friend who also suffers from migraines. She found out, after years of tests, that she had a spontaneous CSF leak. I read that tumors are actually one of the causes of this condition and was just curious if anyone else had this rare condition along with the AN. I will be getting tested for this, as I have a few of the symptoms that aren't explained by the AN alone. (Clear fluid from one nostril following the onset of a headache and bending over). If positive, this may explain some of the headaches and migraines I suffered years prior to the AN.

JaneK

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Re: CSF leak prior to treatment
« Reply #5 on: October 26, 2017, 05:00:29 pm »
Hi Flo,
I'm brand new myself and still waiting to be seen at Mass General but I explained to the doctor and radiologist tech before my diagnosis that last spring I noticed a salty water that drained from my right ear, the one now with two an s behind it. It was a decent amount, I'd say about a tablespoon. Then my ear had a salty residue which I kept noticing when it dried for about 2 weeks. I don't have any explanation, there was no trauma or problem present at the time just fatigue. That was followed by brain fog and difficulty with word find and a little slurred speech and auditory processing problems for the two weeks that followed the ear drainage. I thought it was fluid that was trapped in my ear that finally released but now I'm thinking it's possible that it was a CFS leak, mostly due to the tiny crystals that remained after the fluid dried. I had slight crystals in my left ear too and I show no an in that one but I definitely have tinnitus in that one as well with fluctuating hearing loss. I don't know what to make of it but I think it's very possible.

alabamajane

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Re: CSF leak prior to treatment
« Reply #6 on: October 27, 2017, 11:20:57 am »
Jane,
I’d definitely remember to tell Dr Barker about it,,

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

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Re: CSF leak prior to treatment
« Reply #7 on: October 27, 2017, 03:52:57 pm »
Jane, your symptoms, some of which don't sound related to your tumor could be due to CSF leak. Do some symptoms become better or worse when you lie down as opposed to standing up?

Flo2009

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Re: CSF leak prior to treatment
« Reply #8 on: November 07, 2017, 06:45:37 pm »
You should definitely get tested for a CSF leak, Jane! It’s pretty important. Not only is the leak itself problematic, but if CSF is getting out, that same hole it’s leaking from, can also let bacteria and other nasty things in!
Testing is as simple as just taking a sample of the fluid (or even the crystal residue). The hard part is finding the actual location and cause of the leak. Read up a bit on the subject. There’s actually quite a bit of information out there for such a relatively rare condition. Let us know what you find out!