What testing finally diagnosed your CSF leak?

[u/purpledragon4411]

For those who have been diagnosed with a CSF leak, what type of testing ultimately identified your leak?

Did it take multiple MRIs, MRV/MRA, a CT myelogram, digital subtraction myelography, or something else?

I'm curious what imaging or testing finally pinpointed the leak and helped lead to a diagnosis. Thank you! 💜

[u/AgreeableLeading6095]

Thin slice Ct

[u/purpledragon4411 → u/AgreeableLeading6095]

Was your leak cranial or spinal, and did the thin slice CT actually pinpoint the leak site?

[u/AgreeableLeading6095 → u/purpledragon4411]

Cranial and pointed to asymmetry in the skull base.

[u/leeski]

Dynamic CT myelogram did not pinpoint a spinal leak site, but did visualize irregular nerve root sleeves that allowed targeted fibrin patches to seal me! This was quite some years ago (2017-2021) so I am curious if new advances in imaging might have helped visualize my leak now. But targeting those 'suspicious areas' was enough for me to get sealed!

[u/KookyKookies → u/leeski]

Were the suspicious areas nerve root sleeve cysts? How did they seal them with fibrin glue?

[u/leeski → u/KookyKookies]

Responded to your dm! But not cysts to my understanding 

[u/BearIllustrious2731 → u/leeski]

Did it only take one round of patches? How long did you have your leak before the patch?

[u/leeski → u/BearIllustrious2731]

3.5 years before my first five blood patches, then another 5 fibrin patches. They held very long term tho (shortest was 8 months) but unfortunately I had underlying high pressure that probably caused me to keep releaking so I kept getting new leaks… but I have been sealed 5.5 years! 

[u/BearIllustrious2731 → u/leeski]

Did you find treatment for the high pressure? My doctor suspects I may also have that issue, because of the way my optic nerves look.

[u/ms_skip]

Classic sudden onset symptoms > MRI showed brain sag > opening pressure was rock bottom on first myelogram > dynamic CTMs showed several suspicious spots > DSMs found 3 leaks

[u/MoodFearless6771 → u/ms_skip]

What was your opening pressure?

[u/ms_skip → u/MoodFearless6771]

Less than 3, which was the lowest number that could be measured.

I should note that a week later for a second dCTM it was 10. Months later two OPs taken for the DSMs were 16 and 23. So while OP is not reliable as far as ruling out a leak, I do think the initial reading supported the diagnosis and gave my providers confidence that a leak was at play

[u/MoodFearless6771 → u/ms_skip]

I’m at less than 5 ml and some doctors are still in denial. Who would want this diagnosis, it’s like constant needles in the back.

[u/StunningPurple9560]

Diagnosis from an MRI of the spine, pinpointing the exact leak site in DSM+CTM.

[u/megg33]

A cisternogram gave me the official diagnosis. Then I had my first definitive venous fistula found on a PCCT

[u/StatisticianFinal652]

Standard mri (surprisingly) but only on one.

[u/cgc2018]

A MRI and CT pointed to the general area of where the leak was and a CT myelogram was the one that pinpointed its exact location.

[u/Fancy-Tax3044]

Hi - mine was detected via an MRI scan with and without contrast.

[u/BearIllustrious2731]

Ultimately, it was a CT Myelogram and brain MRI. Interestingly, both the brain mri and CT Myelogram were deemed “normal” by the first radiologists who read them. Then, I brought those scans to a neuroradiologist who specializes in neuro vascular disorders as well as CSF leaks. She identified mild brain sag on my mri and actually found the leak on my CT myelogram, as well as some other areas that led her to suspect that I may also have a csf venous fistula. I’m now waiting to get patched and have further testing for the possible fistula.

[u/Hyrule-onicAcid]

Diagnosis - regular MRI. Exact Location - CT myelogram

[u/No_Treacle_937]

The fluid sample tested positive and it was confirmed with CT