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Csf Leak - Is Contrast The Only Way To Spot It?


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There has been many posts i have read on having contrast with an MRI scan for possible CSF leaks. My question is are there any other forms of testing that can be done so you do not have to have a contrast administrated? Im due to have it next week and because i am going through a very sensitive stage with drugs at the moment i really dont feel it is a good idea, but my Nuero insists it has to be done.

Any help on this would be great.

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I have a chronic daily migraine and I was told the way to test it is with a spinal tap to check pressure/level. Unfortunately, I had a horrible experience with the spinal tap which caused more problems than my original headache, so I wouldn't recommend it.

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The definitive test for a CSF leak is a lumbar puncture (spinal tap). The type of headache from POTS feels like a CSF leak headache which is why the diagnoses get confused. Before I was dx'd with POTS, they thought I had a CSF leak. I had a lumbar puncture and they ruled a CSF leak out. I had no problems with the lumbar puncture. In fact, I felt fabulous in the recovery room (turns out because of all the IV fluid I was getting, lol)

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I had a CFS leak from a epidural in the month that proceeded my dysautonomia diagnosis. I was given CT/x ray contrast and was scanned under fluoroscopy in the interventional radiology suite. Which I don't recommend due to the potential contrast issues, especially since you are pursuing mast cell related issues. Your neuro is likely not familiar with MRI gado can also trigger mast cell issues in mast cell sensitive patients, as there is little published, but it is anecdotal among a bunch of us patients.

There is a old school procedure in the nuclear medicine world where a radioisotope is injected and the CSF leak can be localized with a lumbar puncture. This does't avoid the spinal tap, but does avoid the x ray or MRI contrast. Just something for your neuro and nuc med doc to consider.

Best wishes,

Lyn

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Thanks for the information, can anyone tell me on here who has Mast Cell Issues, and has had a contrast administered, exactly how long after their MRI did there MCAD problems flair up for.

My nuero has been pushing for this to be done for a month now but i just dont think its a good idea at the moment.

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From what i am aware of the symptoms of daily headaches that are worse once you get out of bed and are in the supine position, and ease when you lay down.

All the usaul symptoms are quite vague and vary from pressure in the neck and head, sickness and nausea, ringing in the ears, balance problems etc ect. I have read that sometimes the fluid that leaks can run out of your nose and back of your throat, but i do not have this. My nuero said a leak would fit with a classic case of low pressue on the brain which most have with POTs.

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A spontaneous CSF leak is pretty rare. My symptoms were a crushing orthostatic headache that went away when I laid down and nausea. Turned out to be from POTS, not a CSF leak. I'm confused though, because I don't think an MRI with contrast alone will diagnosis a CSF leak.

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I'm confused though, because I don't think an MRI with contrast alone will diagnosis a CSF leak.

Yes, I asked my neuro how we check for this and he asked his radiologist friend and was told they are hard to detect. And in my case if I had a leak, it would be a slow leak or a small leak - which would be really hard to pick up. Would orthostatic headache be a definite symptom? I don't have a headache, but pressure in the head which is different I think. I remember when I had my LP years ago and the headache I got standing up after that was like getting hit in the head with a bat - it was quite dramatic. I do have fluid or something wet coming out of my ears after I get up from laying down. I have no idea what it is -it's not wax. Can cerebrospinal fluid leak through the ears?

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My headache from a CFS leak was definitely different than my current histamine headache, but both of them will subside when laying down and not moving. I have also had a CSF headache after a CT myelogram which was performed in 1984, when the contrast was removed leaving a CFS deficit and caused a horrible nightmare headache for days. My most recent CFS leak came on slowly and was treated 2 weeks aften an epidural, after I complained about this horrible headache when upright. I was given a blood patch. Basically they took out blood from my arm then reinjected into the space where my epidural was. It was the oddest procedure I have ever had, because I could feel the blood go through my spinal column then I felt the worst pressure I have ever felt before my ears popped and then "spoof" my headache was gone. The blood fills in the space that was missing the CSF. I came into the department slumpted in a wheelchair and couldn't even tolerate lights, then walked out a few hours later.

Why don't you see if the headache subsides with a benedryl and then if that doesn't work, you could try one asprin, as long as you aren't senstitive to asprin. Benedryl blocks histamine receptors and asprin blocks prostaglandins, which either could be the culprit in a histamine headache. If that doesn't work, then you could go back to considering a CFS leak.

Lyn

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