Meningitis Now

Misdiagnosis of VM - read if you get headaches while sitting or stand but resolve when laying down

Hi,

Back in August, I had headaches, stiff/sore neck, tinnitus, a bit of hearing loss. A few days later, double vision. I got a VM diagnosis and went home. It was pretty awful but things would get a bit better and then a bit worse.

I'd lay down for a few days, feel a bit better. Anytime I did anything, headaches etc.

I had an MRI in Sept showing thickening of the meninges, consistent with VM. Another MRI in October, same thickening, same headaches, tinnitus etc - maybe a little better.

November - same symptoms. I thought my VM would slowly get better.

Had an MRI in December and I was found to have a subdural hematoma (fluid/blood collection next to the brain) that was big enough to shift my brain about 5 mm.

They emergency medical evacuated me to a neurosurgery center to do brain surgery - two holes in the skull to clean out the subdural hematoma.

Within minutes of speaking with the neurosurgeon, he changed my diagnosis to a spinal fluid leak and canceled my surgery. I asked if VM caused the spinal fluid leak. He told me that I never had VM - a spinal fluid leak looks just like VM. It causes negative pressure in the spinal fluid space and causes the meninges to inflame and thicken. Eventually, it pulled blood and fluid into the space - the subdural hematoma.

I had read my MRI report and it never mentioned a spinal fluid leak as a differential diagnosis. I asked him about that - he said it's common knowledge in the neuroscience world but not in general medicine. My family doctor had never heard of it.

The key difference was a positional headache - worse standing or sitting, better laying down flat. For me, it seems to get worse standing or sitting, later in the day.

Here's some info worth reading:

spinalcsfleak.org/about-spi...

3 Replies
oldestnewest

Wow! That is super interesting! I have never heard of a Spinal fluid leak before. Thank-you for the excellent information. Does it usually resolve with a complete recovery or do the symptoms tend to linger? Are you recovered as of yet?

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My understanding is that it will completely resolve when fixed. My neurologist suggested 28 days (after it's fixed/no headache) of no lifting more than 10 pounds, taking it easy, no pressure in the abdomen etc to ensure it healed correctly. I had to do a week bed rest - no stairs, laying flat, slow movements etc.

I haven't had a headache in two weeks.

It's super undiagnosed, but a real thing.

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I wish mine had been that simple. It has been over 10 years now. Nothing makes the headache worse but it is bad real bad 24 hours a day. Standing, sitting, laying down always the same. Morphine is the only relief.

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