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Old 04-26-2021, 07:01 PM #1
Hagrid Hagrid is offline
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Default Do I have CSF Leak? I don't fit the usual symptoms.

Greetings everyone,

I've been diagnosed with CSF and am scheduled for surgery on May 21. But I'm not totally convinced that this is the best way to proceed.

Any advice or comments are welcome.

Here's my background:

Male, 62, I live in Michigan
I've had no head trauma and no head/nasal/sinus surgeries. I have high blood pressure and diabetes, treated with medicine. I've had severe hearing loss in both ears since age 5. I have sleep apnea and use a CPAP

Most days my left nostril just drips occasionally - enough to have to keep blowing my nose. No snot. Just clear liquid.

On a really bad day, it drips, on average, every 15 seconds. (I've timed it)
These really bad days are unpredictable. Sometimes 3-4 weeks in between.
I'm only able to collect enough fluid for testing on one of these bad days.

I've had this runny nose/dripping, probably for years, assuming it was allergies. I just lived with it and tolerated it.

Seems to have gotten worse lately, so I went to an allergist. I was tested and no allergies were found. Referred to an ENT specialist.
Nasal samples were tested for CSF.
I'm given a specimen container to collect drippings at home. When enough is collected, I take the sample to the lab and blood is drawn.

CSF #1 Test positive
Taken to, and blood drawn, at LAB 1.

CT scan - nothing found

CSF #2 Test negative
Taken to, and blood drawn, at LAB 2.

CSF #3 Test positive
Taken to, and blood drawn, at LAB 1.

I inquired about the potential that the analysis might have been done differently, or incorrectly at the two locations. I was told that for consistency, all samples are sent to the same location for analysis.

The Dr, who is also the Chief of Rhinology, wants to proceed with surgery due to the risk of meningitis.

Here are 12, off the many, symptoms of CSF.

I only have 1 symptom.

Dripping from nose - Yes
Left Nostril

Dripping from ear - No

Headaches - No
(very rarely, probably not even one per year)

Head, neck, or eye pain - No

Dizzy - No

Blurred vision - No

Hear sloshing in my head - No
(I do have tinnitus and I hear ringing/noise all of the time)

Head trauma or surgery - No

Dripping down my throat - No

Lost sense of smell -No

Taste salty or metallic - No

Accumulation of fluid that pours out rather than drips - No


These generally DO NOT HAPPEN when a person has CSF.
But they do for me.

Dripping stops when laying on back - Yes

Atavent nasal spray stops the dripping - Yes
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Old 04-27-2021, 01:47 AM #2
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Hi, Hagrid,
Welcome!

I'm not knowledgeable about CSF leaks at all but I'm assuming you are talking about a possible CSF leak.

Apparently there are a couple of other tests you probably should have since there's some doubt about the diagnosis:

Cerebrospinal Fluid (CSF) Leak: Johns Hopkins Skull Base Tumor Center

And according to this (Medical News Today, December 2019), conservative treatments should be tried before thinking about surgery:

Cerebrospinal fluid (CSF) leak: Symptoms, treatment, and more

I'm sure that others here will come along with some replies for you before long.
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Old 04-27-2021, 03:05 AM #3
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Hi Hagrid

Welcome to NeuroTalk .

I know little about CSF but I hope the information that agate has provided will help you.

Best wishes.
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Old 04-27-2021, 08:47 AM #4
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Welcome Hagrid.
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Old 04-27-2021, 11:37 AM #5
Hagrid Hagrid is offline
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Thanks. I will be asking that more tests are done, including the one mentioned.

After I created this thread, I realized I forgot to include the word "leak". But I was unable to find a way to edit and change it.
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Old 04-27-2021, 07:59 PM #6
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Quote:
Originally Posted by Hagrid View Post
Thanks. I will be asking that more tests are done, including the one mentioned.

After I created this thread, I realized I forgot to include the word "leak". But I was unable to find a way to edit and change it.
The heading for your post mentions "CSF Leak" now. It's a bit hard to make changes after the editing "window" has closed, and I don't remember how long a time that window is--maybe only a few hours?

After that if you want to edit a post you'd need to contact a moderator.

I'm pretty sure most people will understand what you meant though.
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Repeal the law of gravity!

MS diagnosed 1980.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: glatiramer acetate (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 05-09-2021, 09:44 PM #7
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Hi Hagrid

Welcome to NeuroTalk .

I have had extensive experience w Neurologists and specialists due to post concussion syndrome. I became a little familiar w CSF leaks but hopefully the other info given can be helpful.

Through my road of many doctors, tests and medical opinions I've found that coming back to your inner self is the greatest healer of all regardless of the condition.

Before giving up your healing power to anyone else I suggest revisiting the light within.

HEAL - TRAILER - YouTube

The book by Louise Hay "you can heal your life"
You Can Heal Your Life You Can Heal Your Life - Google Search


Shine your light
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