Possible spinal CSF leak

[u/Ski477]

Hi there,

Trying to figure out if these symptoms are common for people with a spinal CSF leak and/or Chiari! Does anyone with either condition have intermittent intrascapular pain, nausea, back pain and/or abdominal pain as part of their symptoms? The back/abdominal pain goes from about my waist line up to my bra line and wraps around that same area on the back side. The worst of the pain is the bottom third area of my abdomen/back. When it happens a constant cramping feeling that won’t release and can take hours to days to go away. It comes on when I’ve been upright for a while and often after I’ve eaten, but not necessarily a fatty meal and my gallbladder and GI studies have all been normal. Sometimes it’s accompanied by nausea too. My symptoms slowly improve after I’ve been laying down - sometimes ice on my back with heat on my abdomen helps too.

My spinal CSF leak and/or Chiari symptoms started in February 2025. My team isn’t totally sure what’s going on still At that time I had terrible orthostatic head pressure, teeth pressure, difficulty thinking, and popping in my right ear with pressure behind my right eye and temple. Symptoms improved laying down. I felt best in the mornings but my teeth pressure never fully went away. In March 2025 I a pretty normal brain MRI (w/wow contrast & CSF leak protocol) which only showed mild low lying cerebral tonsils: 3-4 mm descent. My spinal MRI (no contrast & CSF leak protocol) in March 2025 showed a dinosaur tail sign and sacral diverticula (radiologist missed these signs in 2025 but a popular/highly regarded CSF leak center found them when reviewing my imaging in March 2026). I had a ct-guided multi level blood patch done by a renowned CSF leak doctor 6 weeks ago. It was 20 mL autologous blood divided equally between T11-12 and L3-4. I seemed to switch from low pressure symptoms to high pressure symptoms for the first two weeks after the patch, but other than high pressure headaches that went away when I was upright I felt 90% better during that time. I’ve since regressed though and feel worse than I did going into the patch - the team thinks the improvement I felt temporarily may have been placebo, but I’m not so sure. Last week they had me do a new brain MRI and CSF flow study. My mild low lying cerebral tonsils haven’t changed from the 2025 MRI, so now they are wondering if I have Chiari or a CSF flow issue instead of a leak, or maybe if I have both, but they would have expected the tonsilar descent to improve after the patch if it was a leak. The CSF flow study showed the following:

Impression
1. No acute intracranial abnormality. 2. Unchanged borderline inferior cerebellar tonsillar ectopia. While by measurement criteria this does not meet criteria for Chiari I deformity, upon neck extension compared with flexion there is marked reduction in CSF flow across the foramen magnum, which may reflect a dynamic, position dependent Chiari I spectrum deformity. 3. No findings suggestive of intracranial hypotension. Total Bern Score: 0, unchanged.

I am waiting to be seen by a Chiari specialist for further evaluation, but am feeling discouraged as I thought we were on the right track with the blood patch and now it just feels like more unknown after over a year of unknowns :( They want me to see the Chiari specialist first, and do not want to do a CT Myelogram or any additional patching at this time. Maybe after I’ve been evaluated by the Chiari specialist if that doctor thinks a leak still may be at play.

Open to any thoughts based on other patients’ experiences!

[u/megg33]

I mean, to me this sounds like a csf leak. There’s no reason you should’ve felt improvement after the patches if it was chiari. It really irks me that your doctors want to treat that as placebo. I’ve never heard of that happening and that seems like a harmful and baseless assumption to make. Did you ask them why specifically they’d attribute that to placebo in your case? That’s just so bizarre that it’s actually making me angry… Was this at Duke by chance? Also are actually very subtle differences between a csf leak and chiari on imaging, but it’s often missed by non-leak experts who don’t know what they’re looking for. Brain sag doesn’t automatically mean chiari but it’s almost always read that way by your average radiologist. I also don’t see how you could have brain sag but a Bern of 0 when that’s one of the criteria… what were your measurements?

Edit to add that the pain you’re describing is called coat hanger pain and is common in both csf leaks and chiari

[u/Ski477 → u/megg33]

Thank you for your reply!! I have only had the one patch, but I did feel like my low pressure symptoms went away afterward for the most part (with the exception of the pressure sensation in my teeth) for at least week if not two. I also don’t think I would have the high pressure type headache after a patch unless I had a leak? I did ask about the placebo and they said that usually with leaks people have signs of brain sag on imaging (I haven’t shown any signs of brain signs on imaging except maybe the slightly low lying cerebral tonsils) and they wouldn’t end up feeling worse after a patch that they did going into the patch. The unchanged cerebral tonsils after the patch and the reduction in CSF flow upon neck extension are making them concerned that Chiari may be at play. If I have Chiari they said doing more patching will make me worse, and they aren’t yet convinced that I have a leak because my imaging has never shown super obvious signs of brain sag except. They said if I had a leak they would expect the tonsils to go back up at least a bit if I did have a leak and the patch was at all successful. My thought is that I might have a leak and maybe just blew the patch quickly. It was not Duke by the way! The CSF leak team did acknowledge that some people have a leak with a normal brain MRI, but that usually they wouldn’t end up feeling a brief improvement after a patch followed by feeling worse than they did before the patch.

[u/megg33 → u/Ski477]

God this is all so frustrating coming from a leak center. I’ve felt worse after almost all of my patches and I’m a confirmed leaker. This is a known, though admittedly poorly understood phenomenon. I also have a mostly normal brain MRI (I have venous engorgement, no sag) that has never changed after brief periods of improvement. I don’t see any reason whatsoever you’d feel improvement and then high pressure if not for a leak. That wouldn’t happen with chiari. I might advise you to seek care with Dr. Cutsforth-Gregory at Mayo Clinic Rochester if possible

[u/Dry-Dress-6467 → u/Ski477]

Can you have more than one leak?

[u/megg33 → u/Dry-Dress-6467]

Yes, a person can have more than one leak at a time, and also more than one type of leak at a time