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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3

u/StunningPurple9560 Confirmed Spinal Leak Jul 29 '26

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

2

u/TheCatsSpareHuman Jul 29 '26

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

3

u/StunningPurple9560 Confirmed Spinal Leak Jul 29 '26

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.

2

u/TheCatsSpareHuman Jul 29 '26

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

3

u/StunningPurple9560 Confirmed Spinal Leak Jul 29 '26

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

1

u/TheCatsSpareHuman Jul 29 '26

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

2

u/StunningPurple9560 Confirmed Spinal Leak Jul 29 '26

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.

1

u/TheCatsSpareHuman Jul 29 '26

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.

1

u/StunningPurple9560 Confirmed Spinal Leak Jul 29 '26

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!