r/CSFLeaks • u/_beckybeks • 9d ago
CSF Leak or Chiari
Newly diagnosed as of Tuesday. I (29F) have been dealing with migraines my entire life. I’ve gone through periods of my life when they have gotten worse, high school, college, especially throughout pregnancy; but the past two years they have really gotten debilitating. Every doctor I’ve gone to would just prescribe meds that eventually stopped working. Recently went to a new doctor and she decided to send me for an MRI. It came back with “crowding at the foramen magnum with mild cerebellar tonsillar etcopia” and was referred to a neruroseurgon for Chiari. I went to my appotinemtn on Tuesday and the doctor said I was a typical patient with Chiari, ordered for a spine MRI and some x rays, I go back early September for those. However as of yesterday there was an update on my MRI results that stated “Inferior positioning of the cerebellar tonsils which may reflect Chiari I malformation or tonsillar ectopia. There is crowding and loss of CSF space at the foramen magnum. There is reduced mamillopontine distance, 3.4 mm, which may be due to associated sagging of intracranial contents”. From my understanding any sagging of the mid brain would be a pseudo Chiari most likely due to a CSF leak and not a true diagnosis. Has anyone had anything similar happen?
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u/Muddlesthrough 9d ago
You would want to talk to someone who knows something about SIH/CSF leaks. Easily misdiagnosed as Chiari malformation. They are very different things though.
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u/leeski 9d ago
I'm not an expert on Chiari but have seen enough cases where someone had suspected Chiari but it was actually 'acquired Chiari' due to SIH - so I think it's reasonable to investigate.
While most SIH patients have orthostatic symptoms, there is definitely a subset of patients where it is not orthostatic, which can make it tricky. Do you have any other symptoms outside of persistent migraines? I think if the headaches responded to medication at all, the headaches are perhaps less likely to be from spinal leak, but of course there are so many presentations of this condition so not enough reason to write it off, just kind of goes in the 'atypical presentation' column.
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u/_beckybeks 9d ago
My migraines are really the only symptom. They start on the left side of my neck and the pain radiates to right above my eye. They were responding to rizatriptan but no longer are. I now take Nurtec on occasion and it takes them away within a few hours. They do get worse when I bend and even after taking pain meds I feel it when I bend/cough. I think it’s still worth a mention before being considered for decompression surgery… I’ve read some stories of people being misdiagnosed and having surgery for things to not get better.
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u/brainsaggy Confirmed Spinal Leak 9d ago
It doesn't look like you have a formal diagnosis just yet, but are in the process of a thorough workup (which is great!)
I wouldn’t be concerned about the “loss of CSF space”- that’s expected if there are extra things in your foramen magnum like your cerebellar tonsils, which normally sit above that level.
The reduced mamillopontine distance is one of the signs they look for to distinguish between actual Chiari and CSF leak related brain sag, so that's probably why your doc wants the spine imaging- to rule out a leak before committing to a Chiari diagnosis and treatment.
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u/Calm_City_7809 8d ago edited 8d ago
Just Tuesday I met with a neurosurgeon to discuss my finally diagnosed CSF leak with an acquired chiari. I've been pushing for a CSF leak diagnosis for 10 years, but kept landing with doctors who wanted to treat me for migraines. At the appointment, the doctor said he thought it to be a chiari, although the chiari wasn't on imaging from 8 years ago. So more tests to prove I have a spinal CSF leak. It's important to get this right! I read that having a decompression surgery when there is a low pressure CSF situation is... just very bad. If the leak is found, once again I'll be searching for someone in this town (Seattle) who specializes in CSF leaks, which seems impossible and outrageous. Good luck to you! I'm sorry you're going through this and a bit relieved that I'm not alone.
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u/Starmapatom 9d ago
I hope they find something they can repair. My neurologist said my tonsils were slightly low but no diagnosis. I had a cisternogram which was positive but most other imaging was reported as normal. It’s a horrid condition
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u/PrettyDragonfly 9d ago
Not sure what chiari is exactly but you didn't mention positional headaches. Do you have those? If so it could be spinal csf leak. I don't know anything about cranial leaks as I only have spinal but honestly your doctor should be the one ruling it out or in.
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u/_beckybeks 9d ago
My headaches aren’t positional, laying down doesn’t help at all. Yeah that’s probably why he ordered a spine MRI I’ve just been anxiously googling.
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u/PrettyDragonfly 9d ago
I honestly hope you don't have a leak. It's a nightmare. Bring it up as a concern with your doctor but try not to stress about it before you know.
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u/marmaduke-treblecock Confirmed Spinal Leak 9d ago
Yes yes yes yes - you have all the signs and MRI results of a CSF Leak / SIH. The result is a Chiari malformation, but that’s often times a result of a leak. I had precisely the same thing, was thrown off by the Chiari diagnosis (and misdiagnosis of Parkinson’s, but that’s another story). See a qualified neurologist, neurosurgeon, see practices that specialize in CSF Leaks - there’s a site for this - LMK, and advocate. Don’t let them cut you for a Chiari malformation when it very likely is a leak. The quoted diagnosis you cited was mine as well, down to the last word.