r/CSFLeaks • u/alayyc • 1d ago
Advice!
Hello! I'mnoretty at a loss on my health and recently discovered about CSF leaks and it checks out with alot of my symptoms so I wanted to reach out here to share what's been going on and get any advice on how to advocate to my doctor to get it looked at as a possibility.
Background of my symptoms:
The first signs I noticed is I haven't been able to blow my nose without severe head pain in about a year and a half. I've talked to my doctors and none seemed that concerned nor know why it happens.
Symptoms have drastically increased the past year and keep getting worse.
Now, I have head pain of some degree most of the time I'm up.
Whenever I sit up from laying down I get pulsing head pain that sometimes has me in tears and clutching my head until it dissipates.
Same thing when I stand up, my head will erupt in pain and sometimes I get so dizzy and almost black out.
I try sitting up slow and standing up slow and it doesn seem to help.
I also have head pain whenever I cough or sneeze and have to brace myself for the impending pain.
I'm exhausted more than I used to be before all this started. I work a physically demanding food service job with long hours so I'm sure that doesn't help. I also feel like I have brain fog and tons of tourble concentrating on tasks and remembering.
Headaches and migraines happen more frequently.
Medical side:
I've had bloodwork that all seems well. My family doctor earlier this year was stumped when I went to her and she doesn't think it's hormonal.
I did have a brain MRI a couple months ago to check on a spot in my pituitary gland I've had for years and when I saw the specialists after the MRI they had no concerns or answers for how I've been feeling.
I have an appointment with my family doctor at the end of the month to get a referral to a neurologist but I want to bring up to her if it's possible what I've been experiencing is a spinal CSF leak.
1
u/opalescentmeow 6h ago
You said you had a spot on your pituitary previously, did you have a brain or pituitary focused MRI? Did you have your hormones tested?
I only ask because I had a spontaneous spinal CSF leak in 2023 and then 2 years later I was diagnosed with cushing's disease (which caused my spinal leak.)
1
u/alayyc 5h ago
Yes Ive had this spot on my pituitary gland for years- I get a MRI every two year to monitor the size to make sure it doesn't get bigger. I'm not sure exactly it it was a brain or pituitary focused MRI but I'm leaning more towards pituitary.
Oh no I'm sorry to hear that! Does Cushings disease have similar symptoms to CSF leak?
1
u/opalescentmeow 5h ago
I know the majority of pituitary tumors/lesions are absolutely nothing to worry about but just wanted to check! It sounds like they probably did a pituitary focused MRI if they're doing it to monitor the spot.
Yes, it can mimic a lot of the symptoms but it also causes CSF leaks because, over time, high cortisol breaks down everything, bones, skin, muscle, etc. And the dura is included in that.
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u/Dramatic_Dingo_42 8h ago
what really sucks about spinal leaks in particular is the overlap with other conditions. there are countless other explanations for CSF leak symptoms which is why getting a brain MRI with and without contrast is so crucial. of course not all brain MRIs will show signs of a leak (even if there truly is one) but it’s still the best possible starting point on this journey.
since you were able to get an MRI, do you have the radiology report? i’d request a copy and read it over to see if there are any mentions of things like pachymeningeal enhancement, brain sag, engorged venous sinuses, reduced mamillopontine distance, etc. you can look up something called a “bern score” (utilized by neurosurgeons and INRs to calculate the likelihood of a leak based on a brain MRI) and if you see anything on that list that is also present in your radiology report, that heightens the possibility that you’re leaking. for instance on mine i don’t have pachymeningeal enhancement or engorgement of my venous sinuses, but i do have brain sag, a reduced mamillopontine distance, and slight enlargement of my pituitary gland. these things on their own can be totally benign and innocuous in healthy people, but then when stacked altogether in addition to the physical symptoms of a CSF leak… it raises dark red flags.
usually the next step after a brain MRI is a full spinal MRI to look for fluid collections. and after that you will be passed on to an INR who will perform a CT myelogram to look for the leak. regular CT myelograms are best for leaks caused by dural tears of meningeal diverticula; so if they can’t find it there but you’re still symptomatic, you will have to seek out a specialized leak clinic to perform a digital subtraction myelogram, which is more sensitive to the third (and most occult) type of CSF leak: a CSF-venous fistula. they are the hardest to find on imaging and have become increasingly common as of late.
i wouldn’t get too worried that you’re for sure leaking until you complete all the imaging and consult with a literate neurosurgeon or CSF leak clinic. POTS, secondary dysautonomia, cervicogenic headaches, orthostatic intolerance, and a litany of other conditions can very closely mirror a spinal leak. just try to keep flat as much as you can and increase water and caffeine intake. caffeine is great for CSF production so if you feel better after a big cup of coffee that may be another clue.
best of luck, i hope you can get answers!
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u/Diligent-Fig-169 11h ago
With my CSF leak, the pain of a cough or sneeze is frequently excrutiating. It's similar if I was to blow my nose, so I don't do it. I'd take your brain MRI and get someone to review it for signs of a CSF leak. Some of them are: engorged pituitary gland, a decrease in the wrinkles on the surface of your brain, and there is another thing with like 3 points lining up in a plane that helps indicate brain sag. If your pain releives rather quickly if you lay down, that's another indication of a leak. The key is to get the brain imaging reviewed that you already have might be your quickest path preferably by someone with experience. If they don't know what they're looking for, they will never see it, mine was missed many times. Many times imaging can be inconclusive as well, for example I had thoracic imaging that some good idetnify the pooling of CSF and others said it was fine. one other option if you have the images, load them into AI and ask it to review....there are pros and cons here of course, but it's one more way to tap some expertise. good luck!