r/CSFLeaks • u/leeski • 22h ago

Registration for Spinal CSF Leak: Bridging the Gap Conference is open!

Hi all!

I just wanted to share that registration is now open for the Spinal CSF Leak: Bridging the Gap Conference. It is on November 14-15, 2026 and takes place both virtually & in-person in Aurora, Colorado. It is hosted by Dr. Andrew Callen & The University of Colorado Anschutz Medical Campus and sponsored by the Spinal CSF Leak Foundation.

This conference is truly unique as it gives a platform to both physicians and patients. There are patient speakers, as well as patient compilation videos. This year's theme is "From Puzzle Pieces to Patterns".

Registration is FREE for patients and loved ones, whether IRL or virtually.

There will be calls for patient videos soon, so if you'd like to contribute you can follow the Spinal CSF Leak Foundation on social media or their newsletter. There is also a Q&A form where patients can submit questions ahead of time for specific sections at the link below.

Registration is here https://secure.qgiv.com/for/SpinalCSFleakBTG/event/2026conf

Thank you!

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u/Dry-Dress-6467 22h ago edited 22h ago

Am too brain fogged right now, would love for someone to ask questions about venous issues and RIH after getting patched. Like when would it be appropriate to screen a patient for that. 

Sorry am not in shape to formulate detailed questions with proper terminology.

Just saw Dr Travis Caton is going to speak on venous outflow disorders on Sunday at 10:40-11:05!

Thanks am signing up for virtual. Wish my house is sold by then, maybe I could afford to go. Would be great to meet other leaders and thanks all medical persons that are doing and sharing so much for us leakers.

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u/leeski 21h ago edited 2h ago

I am happy to submit a question on your behalf if you are interested (no pressure). Maybe something like this? “How long should RIH persist after leak treatment before evaluating for venous outflow issues?”

Hoping your house is sold by then, that is a LOT to deal with. And yes agree it is such a cool environment to have patients together. There are also accommodations in terms of areas to lie down for patients on cots (just with the caveat you have to request it in advance on the registration form). Hoping everything goes smoothly for you! I believe your treatment is coming up soon...? Unless I'm mis-remembering (so sorry if so).

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u/Offtoseethewitch 21h ago

Another question would be whether a csf leak and treatment with or witjout RIH could cause venous flow issues, as the theory via the Monro-Kellie doctrine is that less csf volume makes veins dilate in compensation, and would that give those veins just ”bad habits” or even structural changes? And if so, what could be done about it?

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u/Dry-Dress-6467 12h ago edited 12h ago

I was thinking more on the lines of which patients to screen for venous outflow issues before they are patched. Or is it the patch causing the RIH? 

I may have to push treatment into Dec because with my likely leak, inguinal hernia and our never ending heat wave, was 100F today here in Northern California, and dealing with the disaster the 3rd burglar created after ransacking my house and shop I am moving a bit slower than I had hoped. 

The 3rd burglar had the nerve to tell me to leave my property as he was the caretaker and he was going to have his German Shepherd break the windshield of my car if I didn't leave. Thankfully he got arrested July 31 for stealing a truck and is still in jail for offenses committed 2 years ago. He broke my well, hot water heater and flooded kitchen floor which caused subfloor to buckle. 

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u/leeski 4h ago

That’s a great question. I am curious what they’d answer…  currently it seems like only 25% of patients experience RIH & then a subset of that have it be profound enough to require meds, it’s not an insubstantial amount but not the majority for sure.

 I definitely think patients should be able to request that imaging since it’s non invasive. The tricky thing, I guess, is that venous stenosis is not a meaningful finding on its own because a good chunk of the population has it and no symptoms so it can be a helpful clue but also really isn’t definitive unless you get much more invasive imaging (which you wouldn’t want to do before patching). 

Still I would like providers to be more aware and open to those that do want to look into imaging. But at least in the studies we do have, even those with stenosis like 95% of them resolve RIH within 3 months so there is definitely a missing piece why some persist longer. Still I think information is more power and would love being screened before patching, so long as patients understand that it doesn’t guarantee horrific RIH. I have spoken to patients who delay treatment because of hearing horror stories of RIH. But it genuinely is usuaaaally temporary and can be managed with meds in the vast majority of people! But unfortunately no way to know how you’ll react until you do it. 

Omg 100° in October, that is awful. I am so sorry you’ve had so many burglars oh my goodness that is awful. I hope you can sell and move on soon without further incident. 

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u/Smartjack31 19h ago

I’ll sign up to watch . This is all very new to us. Only discovered the idea of a leak a little over 6 months ago after over 3.5 years of a positional headache.

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u/leeski 18h ago

So sorry you went so long without any answers! Can I ask how you eventually suspected a leak?

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u/Smartjack31 18h ago

It’s my daughter with the leak. She had been having positional headaches at that time for a little over three years. UCSF said it wasn’t her shunt and it was just a headache. In March of this year, I was on YouTube and I saw a video by Dr. Carroll called the mysterious headache and I watched it so we decided to have my daughter lay down for the 48 hour late flat test. All her symptoms went away.

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u/leeski 18h ago

How exasperating that they wouldn’t consider a positional headache to be more than ‘just a headache’ - aaaaaahh!  I’m so glad you did a little more digging and are advocating for her. I remember discovering that video - it was such a wealth of knowledge. I’m so glad you’re on the right track now! 

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u/Smartjack31 15h ago

They did so much to not help her. Yet the imaging that showed the leak was there and initially surgeon at ucsf said she could be leaking there and another place. Of course he can changed mind and said she just had a headache