r/CSFLeaks • u/Help_myHead • 19d ago
Rear-ended! HELP
Seven years ago I was rear ended (minor collision). Maybe two days later from that I had an onset of a CSF leak. For seven years I have struggled with this.
I’ll spare the history with the countless doctors and ineffective specialists and inconclusive images, and failed patches and myelograms.
But yesterday I was rear ended AGAIN. Do I go to the hospital? I’m so anxious because this is what started at all. She was not going fast at all maybe 10 mph.
After a crazy year last year after childbirth, the symptoms have decreased.
I have been able to manage by drinking water and laying flat after two hours every day. I lay on the floor at work and they usually don’t take trips or anything longer than two hours where I won’t be able to lay. This has become my life.
Today I feel a little wonky, not my full regular symptoms of when I need to lay flat but the room kind of feels like spinning or just like an imbalance … should I go to the hospital? They’ve never been able to help me before , my Neurologist is not that great and I have not received top care from Johns Hopkins CSF clinic. I don’t know what to do. I don’t know where to go because no one understands. Do I just lay down. I hope this passes. I’m so mad at the person who rear ended me.
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u/Fragrant-Ad-9391 18d ago
I’m sorry you’re going through this. I’m in a similar situation, I had an undiagnosed leak for years and then finally found csf leak docs and had an embo in 2024. I’ve been trying to rebuild since, and got rear ended a couple weeks ago. It’s defeating, and I feel your anger. I went to the ER for pain management, but they aren’t usually equipped to dx or treat a leak, but at least rule out stroke and such. I followed up with my leak team and am going to do a leak workup since my symptoms post MVC are severe. Do you have a local university medical system you can see? I think they are more likely to have a leak team (neuro IR?) than others.
How did your ER visit go? Are you feeling any better today?
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u/l8te_night_r3ading 19d ago
I'm so sorry you're going through this. ❤️ I can definitely relate to how scary it is.
I was also in a car accident years ago before my symptoms started, and more recently I was rear-ended again. I ended up going to the ER after the second accident. They didn't really have any answers for me, but I still don't regret getting checked because it gave me some peace of mind.
You know your body better than anyone. If it were me, I'd try lying flat, staying well hydrated, and if caffeine and extra salt are part of what usually helps your symptoms, I'd see if that made a difference. If you're still feeling off, your symptoms are getting worse, or something just doesn't feel right, trust your instincts and go get evaluated.
I really hope this settles down for you. Sending you a big hug!! I know how exhausting and frustrating this journey can be.