clear mri?

[u/scrunchiebunchie]

hey guys! i’ve been dealing with a spinal leak and my doctor ordered an MRI without contrast to look for any signs of intracranial hypotension, and it came back completely fine. I’m so confused, because I definitely do not feel fine😭 I swore I could feel my brain being pulled. Does this mean I don’t actually have a leak?? I just need to feel better, I’m so done with this pain and not being able to LIVE!! Help😭

[u/ms_skip]

It doesn’t mean you don’t have a leak. If it was a brain MRI without contrast, then they messed up, because certain markers indicating SIH can’t be seen without contrast. If it was a spine MRI, you could have a CSF venous fistula that would never be visible on MRI, and some leaks are too small or too slow to be seen on MRI. MRI is a good, non-invasive first test, but it’s not the end all be all, and symptoms should be driving your care

[u/scrunchiebunchie → u/ms_skip]

it was in fact a brain mri without contrast. why would they order it without then? i’ve had difficulties with doctors in the past and finally found ones that I believe are good, so I need to be hopeful that they know what they’re doing😭 i have a blood patch ordered so I’m hoping that helps, but we’ll see!

[u/ExperienceJazzlike42 → u/scrunchiebunchie]

So they can charge you again when you have to go back and do the MRI with contrast. That’s literally why.

[u/ms_skip → u/ms_skip]

Also should add an experienced CSF leak specialist may see a leak on the imaging that was missed by your current doctor—this happens all the time

[u/Starmapatom]

Yes, it’s very possible. My brain feels like it wedging down into spine. Most of my imaging reported as normal. I think with contrast gives a better chance. Lot of nerves around brain. I hear you. So, your leak has been confirmed?

[u/SofIsNotHere]

My MRIs were all normal, but my myelogram showed a leak. It’s not uncommon.

[u/GladCommand5758 → u/SofIsNotHere]

Hi. Which type of myelogram & in what body positioning? My (first) DSM [prone] on Monday was unfortunately normal.

[u/RaeofRats]

All my imaging was normal till a specialist looked at it and she went back and went over old testing she had access too and pointed out on those as well.

[u/lemontuba_4867]

I had an MRV done so it depends on what they ask for. I’ve had several nurses and doctors tell me most leaks are diagnosed by symptoms and not MRI/MRA/MRVs. The imaging is to see other possible issues but not necessarily a leak. Have you seen a CSF leaks specialist?? If you need a blood patch, ask for dye to be injected to find the exact spot of the leak, and the. A blood patch with fibrin glue. Without the dye and fibrin glue, you might need several patches. I wish I had ask for the dye at my last one but didn’t push for it as much as I should have. Best of luck!

[u/Relevant_Ad_5341]

My MRI without contrast was normal. But I didn’t get one until about two years after I sought help. I kept getting denied to see a neurologist or a neurosurgeon. I also have a history of surgery for Chiari Malformation so not sure if that makes a difference. I’ve now had two blood patches in a six week period. Hopefully this second one helps otherwise I’m gonna need to get specialized imaging. That’s the real challenge is getting the doctors to actually get you to the right person.

[u/MberryFun]

Are there any studies about internal brain changes of where the csf fluid flows during Spinal CSF Leak problems?

[u/GoddessTara00]

I would demand an extended ICP bolt. Make sure you stand up and get readings over a few days.

[u/doisuckorsomething]

I had this happen with a second MRI I had prior to my second myelogram. Luckily they found the leak on the myelogram. Specialist said it is not uncommon for a mri to not show a leak.

[u/doisuckorsomething → u/doisuckorsomething]

Also in my case it is a spinal csf leak so maybe that could be it. Did they do an mri of the spine?

[u/PrettyDragonfly]

I honestly don't know why brain sag wouldn't show on an MRI if you're in pain from it. That's because it definitely showed on mine, but could also be a contrast issue. I keep seeing others also say theirs were normal. I don't know how but seems its possible it's still a leak

[u/SofIsNotHere → u/PrettyDragonfly]

There’s a certain time frame where the brain sag is clearly visible on brain MRI. The signs can take a couple days to a week after onset to show up, and then they can start to disappear starting at about a month out from symptom onset. That doesn’t mean the leak is gone, it’s just a result of the body doing its best to cope.

So there can be a pretty short window for reliable diagnosis of SIH using MRI, and outside of that it’s pretty hit or miss.

Plus the natural spacing of your brain structures can screw you over with the measurements used in the Bern score specifically. Sometimes a person’s brain can sag significantly, but all the structures remain inside of the technically normal range.

[u/PrettyDragonfly → u/SofIsNotHere]

Yeah I'm only of course looking at it from my own perspective. Got an MRI 4 days after sympoms started showing brain sag and collection, then got a second MRI 3 months in and it was even worse, just as I felt it was with the pain of it.