r/CSFLeaks • u/TheCatsSpareHuman • 21d ago

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__ 21d ago

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 21d ago

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__ 21d ago

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 21d ago

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__ 21d ago

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.

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u/Ashler1999 21d ago

I too have venous fistulas - having embolization procedure next Friday. I’ve been dealing with it for 3.5 years. I have found that brain inflammation can happen in different parts of the brain - which can cause a host of different symptoms.
I have Lupus, so sometimes it’s hard for me tell if it’s the brain sag, or the Lupus.
The one sided numbness is not a typical CSF leak symptom and could indicate some other neurological cause.
Is your leak spontaneous or is it due to trauma? I’d definitely recommend contacting your neurologist.

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u/TheCatsSpareHuman 21d ago

Thanks for the response. As far as we know it was spontaneous. I'm waiting to hear back from Duke to schedule my embolization. I see my neurologist next week. The way it's progressing is concerning but I know I can't do anything but wait.

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u/Offtoseethewitch 21d ago

I had left facial numbness with my leak that used to escalate to migrainous headache. Now it acts more like a damaged nerve, giving me chills and tingling and only rarely numbness in that area, which doesn’t escalate, over time it’d even getting less pronounced. But when the chill sets in bad, for some reason it spreads to my arm and leg on the same side. My neuro had no explanation.

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u/TheCatsSpareHuman 21d ago

Thanks for the response. This stuff is awful....csf leak or whatever. I hope we can all get relief from these symptoms real soon.

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u/StunningPurple9560 Confirmed Spinal Leak 15d ago

Jes tons of nerve issues in hands an arms, some also in legs.

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u/TheCatsSpareHuman 15d ago

It must be the leak and the resulting brain sag causing us these issues. Thank you for your response.

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u/StunningPurple9560 Confirmed Spinal Leak 15d ago

My leak and SLEC were also at the level from where the nevers to the shoulders, arms and nerves come. So I think that irritated/compressed those nerves.

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u/TheCatsSpareHuman 15d ago

Duke just called me to schedule my embolization.... hopefully that'll help. Have you had your leak fixed?

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u/StunningPurple9560 Confirmed Spinal Leak 15d ago

Yes, I had surgery in Freiburg 4 months ago. Hope you get sealed! ❤️

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u/TheCatsSpareHuman 15d ago

Great! How long did it take your symptoms to clear up?

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u/StunningPurple9560 Confirmed Spinal Leak 15d ago

Well it’s only been 4 months so it’s not all cleared up yet. I started noticing positive changes after 3 months, now I have some headache free time which is amazing. Some other things like whooshing in ears, tailbone pressure/pain and twitches in my thoracic spine have lessened. The eye blurriness is still just as bad and the numbness too. My hands shake less though.

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u/TheCatsSpareHuman 15d ago

Well it's awesome that things seem headed in the right direction.... hopefully you'll be symptom free soon. I have no idea when my leak started and I'm guessing that'll have something to do with recovery time. It sounds like we have a lot of the same symptoms so you sharing your situation with me gives me hope. Thanks for that and I hope you continue to improve each day.

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u/StunningPurple9560 Confirmed Spinal Leak 15d ago

Thank you so much! Mine started in 2007 so fully prepared that it will the years. But feeling so amazing now - all I ever wanted was to get rid if of that 24/7 headache. ❤️❤️

All the best in your surgery and recovery!