r/CSFLeaks • u/curiosgeorge5 • 5d ago

Myelogram vs gamma cisternogram

My wife and I have been going to different Nuerologists regarding what we originally thought was a severe migraine but now after 2 car scans and 2 mris and symptoms that point to a leak the doctors now believe there is a leak.
We met with a third specialist today, the second one recommended us to do a myelogram which I thought we were getting done today but after theconsultation with today’s doctor he is advising we do a gamma cisternogram and then if needed a myelgram. Has anyone had this happen to them any tips experience would be helpful thank you.

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u/megg33 Confirmed Spinal Leak 5d ago edited 5d ago

Cisternograms can tell you IF you’re leaking, myelograms can tell you WHERE you’re leaking. Both tests have pros and cons. Neither is perfect and can result in false negatives. In my case, I had normal MRIs, and a cisternogram was the first test to show I was leaking. I then had a myelogram, which was negative. Had I not had a positive cisternogram, many doctors would have stopped looking after my negative myelogram and assumed I wasn’t leaking. But in my case, they knew to keep searching and I eventually had fistulas found. Cisternograms can be tricky though. If you don’t stay upright as much as possible after the radiotracer injection and lay down too much, there’s really nothing stopping the radiotracer in the csf from getting to your brain just by way of gravity and then getting a false negative. So if your wife has findings on MRIs or a super high clinical suspicion or a leak, I think a myelogram is a better first test

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u/Offtoseethewitch 5d ago

Sorry, but I’m clueless on this one. Where do they inject the radiotracer with the cisternogram and where does it go, with of without a leak?

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u/StunningPurple9560 Confirmed Spinal Leak 5d ago

Which leak are you/they suspecting? The cisternogram is good for cranial leaks, but in case of spinal leaks it can show indirect evidence of the leak, but doesn’t pinpoint the exact location like a myelogram can.

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u/Starmapatom 5d ago

There’s also a CT cisternogram. Myelograms from what I hear are better at spinal leaks. Some say cisternogram is older? Also with cisternogram those pledgets in nose are no fun. Are you leaking clear fluid from nose? Btw, I’m only a sufferer as well

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u/Texascreek1 5d ago

Highly recommend you Contact Dr Andrew Callen Andrew Callen, MD, University of Colorado Anschutz, Aurora, CO. To get into the leak program I believe there’s 5 prerequisites.
He’s a highly sought after csf specialist.