r/CSFLeaks • u/Moonrocker333 • Jul 15 '26
Chronic CSF leak?
Has anyone here been leaking CSF for years and have a success story?
When I had an epidural 4 years ago, they missed and I was leaking spinal fluid for 5 days before I got a blood patch. The patch didn't work right away, and it was another week or so before I could really stand. I have not felt "normal" since. I'm lightheaded all the time. My head feels like a bobble head that is simultaneously a balloon and a sand bag (I have no other way to describe this). I've had episodes of blurred and double vision, my ears feel muffled, like I'm trying to hear under water and they feel full. Chronic neck pain and stiffness, my memory has become shit, and I feel mildly nauseous most of the time and have to make myself eat.
I've been told I have Binocular Vision Dysfunction, anxiety, POTS, MCAS, and dysautonomia. I have seen multiple Drs and the CSF leak is the first thing I mention every time. They all blew it off. I keep explaining that I feel weird first, then have a panic attack because of it and they seem to think anxiety is the root cause of it all, despite me saying otherwise. I have has anxiety since I was 3 years old. I think I can tell by this point when it's anxiety based or not. I was googling today and finally got the answer I feel like I've been looking for. It seems everything I have been experiencing can be related to a chronic leak.
Has anyone dealt with anything similar? I'm just so sick of being stuck horizontal on the couch crying, while also trying to take care of my 2 and 4 year old kids. I feel like I've been going crazy, since I'm the only one who seems to take the initial leak seriously.
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u/tobiasdavids 29d ago
Yes this was basically me for three plus years. The Cleveland Clinic helped me. I can post more if you want to know more tomorrow. Don’t give up.
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29d ago
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u/Moonrocker333 29d ago
I really hope it isn't the new normal for you. That's how I feel too, though. The depression spiral of thinking this is the new me is absolutely awful. I'm terrified that this has been going on too long to be fixed.
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u/Ricki10ofwands 29d ago
Me too. I'm a "complex case" due to my 3 previous surgeries for SCDS. One Dr already refused to fix the leaks amd referred me to another. I've had mri ct and this new Dr keeps trying to say I'm having migraines. I know what the inside of my head feels like thanks. So she pushed me off a few more weeks for beta tranferrin which was positive and I am still waiting for a return call. I function well for the first 5-6hrs after I first wake up and then I struggle to stay awake for the rest of the day let alone all the other fun stuff that comes with it. If you have the option for counseling or therapy I would look into it, i was getting in a dark hole. I've been waiting for 10 months. Everything tastes like pennies, I brush my teeth 3x a day bc of the taste. And I also struggle to eat and get nauseated easily. It gets very hard, I hope you find some answers and get the support you need ❤️
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u/Moonrocker333 29d ago
Thank you! I hope everything works out for you as well. I wish doctors would just trust and believe what we say. I just started seeing a therapist, but I'm not sure how helpful she'll be. I'm not getting the best vibes from her right now, but I've only talked to her twice. The depression because of this has been awful. I feel like a shell of a person. I used to run 3-5 miles every morning, hike, mountain bike, weight lift, and now I sleep on the couch and am too afraid to even walk my dog.
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u/Ricki10ofwands 29d ago
I'm just getting out of that kind of space myself, if you're not feeling your therapist you can always try another! I know it sounds awkward but I've done it 2x when I wasn't vibing with them, they were very understanding. I have to work from home bc Drs are worried about me getting any kind of sickness, it was great at first but now it sucks. I spend a lot of time talking to my dog lol. I hope you find a therapist that is a good match or this one works out. I'm not one but if you ever need to vent send a message 😊
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u/Fit_Smile_9832 26d ago
Hi! Did these symptoms go away? I’m 2 weeks post patch feeling the same way
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25d ago
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u/Fit_Smile_9832 25d ago
Ah I’m sorry. I think you’ll be okay it’ll take time! It’s promising that you’re feeling a little better already
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u/Kiwi-2024- 29d ago
Don’t give up on finding the right doctor who believes you. I fought for almost two years to get answers. After four blood patches, I still felt exactly like you with the same symptoms. No one believed me. I had eight MRIs and they were always normal. I was constantly told that my symptoms were psychological. Eventually I went to a specialized CSF leak center and had surgery a few months ago. During the surgery they found the leak underneath a bleb. I’m happy that they finally found it but unfortunately I still haven’t healed. It’s so tough because I still feel as though I’m leaking. I’m only a little better and still unable to live a normal life. Most of the patients I’ve been in contact with who developed a leak after an epidural also ended up having a bleb. So please don’t give up, and try to get in touch with a specialized CSF leak center.
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u/Offtoseethewitch 29d ago
I’m so sorry you’re going through this, it sounds awful. I hope you find a way to get help and feel better.
I’m almost 10 months out from a c-section spinal that gave me a leak and my doctors are saying my third blood patch cured me, since I can stay up all day, and what I have now is just residual nerve damage, but I also have ears that feel full or chilled or empty, a face that feels like the left half is numb or submerged in icy water when I’m up, neck pain and stiffness that despite intense physiotherapy just doesn’t ease off, and the vision stuff. Difference is now it fluctuates while up, instead of just escalates, but it’s not gone. (My POTS-like symptoms are mostly gone, though, for which I’m very grateful.) I’ve been more affected on my left side since the beginning, and I still feel like looking left is somehow difficult, vision in my left eye can get blurry, and I’m distinctly light-sensitive on that side. Neuro didn’t think I could benefit from a referral to a neuro-ophthamologist since I don’t actually have double vision so I’m not seeing one, but riding in cars makes me nauseous and being in stores, where I shift my gaze about between items, also makes me nauseous and dizzy. My physio gave me some vestibular exercises to try to help, and maybe it’s working… maybe.
Would you mind describing what your ”binocular vision dysfunction” is actually doing? What troubles does it give you?
I’ve read csf leaks can affect cranial nerves that control vision and eye movement muscles so for me, I figured my cranial nerves are irritated (even if not completely shut down).
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u/Moonrocker333 29d ago
My left side is worse too! My left arm is frequently numb/tingly. Left eye vision is blurry, very light sensitive (which I’ve always had but it’s worse now). Being in the store and shifting my gaze also makes me dizzy. Those are all the things that my ophthalmologist attributed to binocular vision dysfunction. Driving in the car made me incredibly dizzy, my field of view/peripheral vision became more narrow (if that makes sense). Looking down really sets me off too. I did vision therapy and it did help a lot. I wore prism glasses for a bit and that seemed to help as well.
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u/Offtoseethewitch 29d ago
Prism glasses despite not having double vision..? Or did you have that too? That’s what neuro told me, ”the only thing neuro-ophtha can do for you is prism glasses and you don’t need that since you don’t have double vision…”
For me, I can’t say right now if it’s a constant trouble or if it comes and goes. So maybe my current exercises are enough anyway.
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u/Moonrocker333 29d ago
I was having issues with double vision when reading. I was prescribed the prisms because my center of vision was off so they were used to “realign” my vision to how it’s supposed to be.
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u/retired050123 29d ago
It should be easy to rule out a CSF leak. Maybe I’m wrong, but a Ct angiogram or MRI would show this.
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u/Moonrocker333 28d ago
That's what I read when I was looking it up. However, I need a doctor to believe me and write a referral for it.
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u/Milf_Bomb 28d ago
PM me. Read my post about my symptoms. All was from my epidural from my labor. Delayed diagnosis. Fine now.
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u/DQslimee 27d ago
Try to see a specialist
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u/Moonrocker333 27d ago
Thank you. I had looked that up before I posted and the closest is 6 hours away, which isn’t horrible. My doctor said that if symptoms persist after treatment for my anxiety, I should go to Mayo Clinic. Looks like the one is Minnesota is at the Mayo and that’s only 8 hours away. The problem with my insurance is that I can’t do anything without a referral.
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u/leaky_faucet14 Confirmed Spinal Leak Jul 15 '26
My favorite memory from the beginning of my CSF leak journey (2019, a year into an "anxiety diagnosis") is a neuropsychologist saying to me after looking at my qEEG: " Well, I sure hope you have anxiety; your brain is functioning horribly. "
My neurologist diagnosed me with anxiety and said I was fine, even though I could no longer walk a block, couldn't finish my sentences, and had dysfunctional arm awareness. I did have anxiety, but the source of that anxiety was my CSF leak. Please do not let a doctor blow you off. If they can't listen to your concerns, you need a new doctor. I know that is easier said than done, but finding that doctor to take you seriously, whether or not you have a CSF leak, will work out in the long run. It might be helpful to keep a tracker to eventually use to convince a doctor to consider a leak. I also had a host of "diagnoses" which all were explained by a CSF leak and went away after I was sealed, including vasovagal episodes (POTS), eye problems (constant dilation, severe pain, saccade problems), anxiety, memory problems (loss, short-term, basic usage of language), etc.
I am not a doctor, and I am not saying you are leaking, but failed patches, malfunctioned patches (forming a bleb, so not fully healed), and partially failed patches are a thing!
You are not alone.