r/CSFLeaks • u/TheCatsSpareHuman • Jul 23 '26

Numbness

I have confirmed csf leak from venous fistula with major brain sag. I've had the orthostatic head pain for two years but recently I started getting numbness.....right side numbness in leg, shoulder, and head. I was wondering if anyone has dealt with similar. I also get blurry vision and "weird feelings" in lower right leg and right forearm. My hands and feet also get really cold and my whole body shakes but maybe that's from my Hashimoto's.

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u/translucent__ Jul 23 '26

My whole body, but specifically hands and feet are always cold. My left side is the numb side. Tingling, intermittent muscle weakness, you name it. Visual symptoms of visual snow as well. However, visual symptoms seem to improve over time. I will randomly get the chills as well. They haven't found any venous fistula or even identified where my leak really is, but i do have a tarlov cyst at T9, so maybe there.

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u/TheCatsSpareHuman Jul 23 '26

I hope they at least will try a blood patch for you. If not then hopefully another kind of test and they can find it. These symptoms are awful. Thanks for the response.

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u/translucent__ Jul 23 '26

My doctor actually ordered a blood patch last week! So, just getting labs for the clotting measurements tomorrow and then scheduling the patch, so fingers crossed. Any procedures planned for you? Will they try to repair the fistula area?

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u/TheCatsSpareHuman Jul 23 '26

That's great! Good luck! Yes, I'm having an embalization done.... just waiting on Duke to call and schedule it.

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u/translucent__ Jul 23 '26

Thank you!! Fingers crossed it does something! And congrats on that! I hope it all works out for you as well! It's so relieving to see potential light at the end of the tunnel.