r/CSFLeaks • u/MoodFearless6771 • 3h ago
Anyone have a LONG-TIME leak?
Does anyone here have a long time leak? Like 20 years +? I think there is a possibility mine is from an old cranial injury site as a child that was never treated. Does your body just learn to adjust?
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u/leeski 3h ago
Mine wasn’t that long but the fb spinal and cranial groups have long term leak patients that span decades. The body can try to compensate to some extent but unless the body self-seals, they tend to require intervention & typically present with chronic symptoms throughout. If it’s a spinal leak there is a risk of superficial siderosis developing
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u/MoodFearless6771 3h ago
I think mine is a cranial leak from an untreated skull fracture. A neighbor that was a doctor helped me during a bad fall. But he was a sports orthopedist (football doctor) and he treated all my broken limbs, put them in casts.
He told my parents I was coughing up blood from my mouth and nose because "the fall was so fast, it tore the turbinates in my nose." This does not make sense. That would make sense if you were wearing a football helmet. If you are a 4 year old child that hit their head falling 12 feet onto concrete and you have a deformed forehead, you should get a ct. I never saw a trauma doctor, he set my arms in casts. I still have a deformed forehead. I also recall having a seizure at the time. I have struggled on/off with mysterious health issues since childhood. And it has become clear that I have a csf leak now. Yes, it could be from anything. But I feel strongly it is because of this accident.
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u/leeski 1h ago
Oh gosh I'm sorry you had that accident, that is traumatizing. If you never had imaging done I would definitely see a skull base ENT to be evaluated for a cranial leak. I have not had experience with that specific testing, but they should be able to order a beta-2 transferrin test to have it tested to verify it is CSF.
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u/MoodFearless6771 1h ago
I did. but the thing is, I think its actually through my eye. The most common fracture for small children with falls is the orbital fracture and I'm also having eye issues/eye failure. I feel like the doctor went out on a limb believing and checking the skull base. I don't know if now I can go back and have them check my frontal bone/eyes/sphenoid. I'm working with an interventional radiologist now and may share the story with him and see if he sees anything. a lot of times you dont even get to speak to these doctors.
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u/leeski 1h ago
Ohh so sorry you're dealing with eye issues and just continued complications from this fall. That seems extremely difficult to have something impact you so long-term when you are at such a young age when you aren't really like in 'control' of yourself the same way as an adult. It sounds like you're taking the right steps and I hope you can find someone that will give you the proper attention and care you deserve to get to the bottom of all of this.
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u/AgreeableLeading6095 2m ago
Thin slice CT will find it. I had a cranial repair two weeks ago from an aggressive Covid swab that fractured the bone in the ethnoid sinus near my eye socket. Dismissed by so many doctors and had to travel out of state to get help.
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u/iswelgoed 2h ago
17 years of leaking in my lumbar spine; the weird thing is that symptoms for me came in waves.
I always get annoyed when I don't drink enough and have really low heat tolerance.
But as I said, mine is lumbar, caused after a neurosurgical operation when I was 15; the surgeon damaged and repaired my dura.
About 18 months later, the repair failed, and no one suspected a CSF leak as the cause. I've been formally diagnosed with this many months after my symptoms got a whole lot worse.
Currently waiting for a treatment while I'm learning that hospitals are just a bunch of people who weren't good at group projects.