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Looking for help about CSF leak symptoms??

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Old 12-07-2014, 03:40 PM   #1
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Default Looking for help about CSF leak symptoms??

Hi all- i will try to keep this short. My 20-year old son developed painful headaches in back of his head in early November. The pattern and type of the pain led his neurologist to diagnose him with occipital neuralgia (irritated occipital nerve). It happened after a very stressful time at school (college student) so we assume it is the result of tight neck muscles. He had his second nerve block this past Friday (first one gave him relief for about 2.5 weeks) and he is on another med for nerve pain.

At the Friday appointment, he happened to mention to the neurologist that when the headaches are really bad he finds relief by laying down (especially on heating pad) and closing his eyes. Also, a hot shower seems to also settle things down. Well, the doctor perked up when he mentioned the "laying down" part and started questioning him about it and then mentioned the postural headaches caused by a leak.

We went back and forth about it but moved forward with the occipital headache treatment. But now, of course, Im wondering if it's something we should follow up?

Does this sound like a spinal fluid leak headache? He does not get a headache upon standing but when he gets a bad "attack" standing is worse and laying down is better. They do generally develop late in the day/evening (which I attributed to using his neck muscles.)

My questions:
If it was due to a leak, would the pain be constant when standing? Also, he was pain free after the first nerve block -would this be the case if the cause was a leak?

His MRI was normal although it was done without contrast

He has NO nausea, dizziness or vision problems.

He went for a short run Friday night and had no pain. Would that even be possible with a CSF leak??

Thank you!! I really don't want to worry about a different diagnosis but I need to gather as much info as I can in order to get him the appropriate care.
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Old 01-17-2015, 11:30 PM   #2
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I don't think a nerve block would have worked. I was given one years ago and it didn't work for me. I was just diagnosed with a spinal fluid leak after ten years of doctors telling me I was fine and just had migranes. In my experience the pain was constant. Does his grt worse when he bends over, coughs, or laughs? As for running, in my case I was not able to do any physical activity without my headache being sooooo much worse. Go to Mayo Clinic in Minnesotta. They found out what was wrong with me after so long of suffering. I had to get spinal surgery in September of last year to surgically repair the tear.

My brain MRI was also normal. My cervical and thoracic spine MRI is what found my leak. Contrast doesn't matter. Has he had any spine mris?
My headaches also got worse at night.
I had no nausea, no dizziness, no vision problems.
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Old 01-26-2015, 04:27 PM   #3
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Nicolette, how are you doing after the spinal surgery? I may need to have that done as patching has not worked so far. I’m curious if I’ll ever return to exercising after having it done.

Holly, I have a diagnosed CSF leak and my headaches are positional. If I lay flat I never get a headache or tightness in the neck. Once I'm upright it takes about an hour or two and my neck gets really tight then around hour 3 the headache starts in. If I lay back down it clears up in 1/2 hour or so. I had a brain MRI (with no contrast) and that showed normal. The leak was found when a CT myelogram was performed. This test will usually detect leaks in the spine. If it's suspected the leak is in the head sometimes a cisternogram can detect that. I've read that if you have drainage from the ears or nose a cisternogram with pledgets can be a useful test. I've never had that test but read it's uncomfortable, particularly the pledgets. I've had two myelogram and another lumber puncture and I didn't find that to be too bad. My imagination of the procedures was far worst then the actual procedures. This is just my understanding from what I’ve read so take it for what it’s worth.
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david01 (04-19-2016)
Old 05-14-2015, 11:47 PM   #4
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My surgery was successful but recovering has been tough. I've been in physical therapy for 7 months now and with the help of Amitriptyline my pain is finally backing off. I'm still having headaches every day but They are way better. I had a very large fluid collection built up from ten years of it being misdiagnosed. The worst part of everything was the myelogram and cisternogram. The surgery was easy compared to that but I was very heavily dosed on pain meds. My advice is start physical therapy as soon as possible. I waited a couple months and think I set myself back by doing that.
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Old 06-29-2015, 12:26 PM   #5
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My younger (12 year old) son had a spontaneous CSF leak. We believe it was a small leak as he was generally able to do basic activities, like go to school. There was no way he could go for a jog. Before the leak, he was very active in sports. Once he developed the leak (possibly due to sports but we may never know) his headache was constant - slightly better when lying down, worse when sitting or standing. No pain medicine we tried helped.

There are some excellent headache centers around that may be worth visiting.
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