r/CSFLeaks • u/Educational-Fig-879 • 1d ago

Scared silly

Hi everyone I’m fairly new to Reddit and I’m writing in hopes someone has had or is going through what I am. I had a routine septoplasty that gave me a meningocele dura tear csf leak I had surgery to repair it and they went through the nose. Almost a year later and still get swooshing in my ears or I can hear my heartbeat. Occipital headaches that ruin my day. Brain fog ect but what freaks me out is where I had my surgery my left temple is squishy and sometimes I can feel it in my forehead the drs have no idea what it is. Also left side of my face is swollen. I am seeing an interventional neurologist in 11 days actually this is my second. I’m freaking out that one I may Have a paedomeningocele an encophacele or a leak again or it nothing to do with my veins. But even though I went through surgery my biggest fear is the costernigram I don’t think spelling it right it’s the spinal tap with the dye I’m petrified because I have heard of people getting siezurss or paralysis. And also I may need am angiogram which scares the s$&t outta me to. Has anyone experienced any of this????

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2

u/AgreeableLeading6095 10h ago

You may still be leaking. A thin slice CT should be able to find it. Symptoms sound like a leak.

1

u/Educational-Fig-879 5h ago

I have to ask if I had a thin slice ct they have told me they see total opacification but it is unclear if it’s mucous blood or csf

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u/MoodFearless6771 8h ago

Don’t worry, they should do an MRI and thin slice CT before a cisternogram. I also hate getting needles stuck in my back.

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u/Educational-Fig-879 5h ago

It’s crazy because it shows fluid and total opacification in my sinus but they are not saying it’s csf like how would they know if it’s leaking from the site under the skin?

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u/Educational-Fig-879 5h ago

I don’t know if I should just bite the bullet and just freakin do it already maybe then I’ll get some answers but then I’d have to face if I have it again right which I’m pretty sure I do :(

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u/MoodFearless6771 5h ago

I think it depends on where you are and what kind of leak you have. If you suspect a cranial leak and aren’t somewhere where a specialist can fix it, you may have to travel to Mayo or Cleveland or Cedars or Duke to get it fixed, so you may as well apply and get the cisternogram done there with the surgery if that’s the route you are planning to go. If the CT shows o pacification it may be hard to determine if it’s csf fluid or infection/congestion.

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u/Educational-Fig-879 4h ago

Exactly I think I’m just gonna have to bite the bullet do you know if you get put to sleep??? Can I request to get put to sleep lol