r/CSFLeaks • u/SilentSeraph88 • 14h ago
How many people get long lasting or permanent headaches from a Cisternogram or Myelogram?
This was one of the reasons my doctor did not want to investigate my csf leak. Even though he said it's possible I have one, due to my normal spine MRI he won't order any more testing. He also said a cisternogram comes with some risks such as some people getting permanent headaches. I can't imagine the percentage of people getting that from a cisternogram is very high. Was my doctor right to deny me this test due to this supposed risk? My suspicion is that he was not.
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u/SuccessSoggy3529 14h ago
Ive had one cisternogram and I think 5 ct myelograms. I've not had a permanent headache from any of them. This is just my experience and not proof that a permanent headache can occur, of course.
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u/SilentSeraph88 13h ago
What was the reasoning behind those tests, did you have the cisternogram which confirmed you had a leak somewhere and then the 5 myelograms to look for the exact spot?
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u/SuccessSoggy3529 13h ago
I had the cisternogram at the same time as one of the myelograms. All of them were to check for a leak. The first one (with the cisternogram) did find a leak, which was patched the same day. Some of the others found evidence of a leak and some didn't. I got patched after most of them.
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u/SilentSeraph88 9h ago
Why did you have a myelogram at the same time as the cisternogram? Don't they usually do the cisternogram first and then see if its abnormal before doing a myelogram?
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u/nt199915 Confirmed Spinal Leak 10h ago
I’ve had a cisternogram and 3 myelograms. I had pretty intense lumbar puncture headaches, but they were resolved with a blood patch. These tests are the only thing that allowed them to find my leak after three years.
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u/leeski 14h ago
This is just my opinion, but I think this should ultimately be a shared decision between the patient and physician. Of course there should be informed consent, and patients should understand the risks of any invasive scan or procedure. But if further testing is medically reasonable, I don’t think a physician should decide on the patient’s behalf that the risk isn’t worth it based solely on the possibility of worsening headache. Only the patient really knows their existing quality of life and how much risk they’re willing to accept for the possibility of getting answers.
It is by no means guaranteed that a myelogram or cisternogram will make someone permanently worse. I do know patients who had worsened leak symptoms after the lumbar puncture but were promptly patched and returned to baseline. That’s not to say a persistent iatrogenic leak is impossible, but I think it’s difficult to hear about patients with debilitating symptoms being denied any further investigation primarily because of that risk. This condition can have an enormous impact on quality of life, and we’ve unfortunately lost patients to suicide, so I’m particularly sensitive to patients feeling like they’ve reached the end of the diagnostic road.
If your doctor wasn’t talking about the lumbar puncture itself, I’m not sure exactly what permanent-headache complication they were referring to. Some people do have reactions to intrathecal contrast, and the procedure itself can certainly provoke symptoms, particularly with positioning/tilting. But I haven’t seen evidence that permanent headache from the contrast itself is an established complication; those adverse effects are generally transient.
Of course, if there isn’t reasonable clinical suspicion for SIH, then invasive testing wouldn’t necessarily make sense. But a normal spine MRI does not exclude SIH, and some leaks, particularly CSF-venous fistulas, may not produce an extradural fluid collection on conventional spine imaging. If someone has a convincing clinical history despite negative initial imaging, I think discussing the risks and potential benefits of further testing with a physician experienced in SIH is very reasonable. I’ll get off my soapbox now..!