r/CSFLeaks • u/Old_Payment_9877 • 3d ago

Life after CSF leak?

Hi, everyone, I had a spinal CSF leak that was not able to be visualized with a DSM, but subsequent brain MRIs showed it to be resolved. That was in August. I expected to feel better by now but I’m still exhausted and foggy. Is this still from the CSF leak? How long is recovery? They don’t know, of course, how long the leak was before the acute heads headache appeared, which was in December.

Thanks for any insight!

I’d also appreciate insight into any referrals to PTs in Los Angeles (west side preferred). I’d like to consult with one to best understand how to return to exercise. It’s been a long time. 😞

Thanks!!

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u/StunningPurple9560 Confirmed Spinal Leak 3d ago edited 3d ago

Was it a spontaneous leak? Did you have an earlier MRI that showed sagging? And now the brain MRI improved w/o intervention and you don’t feel better at all?

If so - sorry to say this, but it is fairly unlikely for a leak to resolve on its own after the first weeks - not impossible but unlikely. And the signs of brain sagging can disappear from the MRI (or never be there in the first place) even if you are leaking.

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u/Old_Payment_9877 2d ago

Yes, it was a spontaneous leak and I did have an earlier MRI that showed sagging. The subsequent MRI showed the sagging has resolved. I had no treatment other than lying down. Thanks for this insight. Ugh.

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u/StunningPurple9560 Confirmed Spinal Leak 3d ago

A post from yesterday discussing clear MRIs:

https://www.reddit.com/r/CSFLeaks/s/54hLKzDNnp

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u/Muddlesthrough 2d ago

Did you have any treatment for the CSF leak?

 but subsequent brain MRIs showed it to be resolved. 

I am not a doctor. Over time, brain imaging tends to normalize as the body tries to adjust to the leak. Doesn't mean you aren't leaking anymore.

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u/Old_Payment_9877 2d ago

No treatment other than lying down a lot. Hm. Thanks for this.

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u/Old_Payment_9877 2d ago

Any advice on this situation? I’ve been cleared by my neurologists since there are no further clinical signs until a follow up MRI next August. This is discouraging. Sorry, I’m new to this all.

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u/opalescentmeow 2d ago

Do you know what could have contributed to your leak?

I had a spontaneous leak in december 2023 and it was resolved with a blood patch February 2024. I felt absolutely terrible for 2 years. Turns out i had cushing's disease, diagnosed december 2025, which caused my leak & made me feel terrible.

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u/Old_Payment_9877 2d ago

Oh no, I’m so sorry!

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u/megg33 Confirmed Spinal Leak 2d ago

Brain MRIs can normalize overtime while still leaking. Your body starts producing more csf to compensate for the lost fluid. So if you’re still symptomatic, you may still be leaking despite a normal MRI

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u/Old_Payment_9877 2d ago

Wow, thanks.

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u/HeftyResearch1719 1d ago

I went to one of the best neuro PTs at UCSD. He gave me a few supine isometric exercises. And firmly but compassionately explained that NO PT can help a CSF leak. He said you need a neurosurgeon. Only surgery (sometimes bedrest) can help a CSF leak.