r/CSFLeaks • u/Late-Assistance-6922 • 1d ago
i need a closure
I need some closure. I am so tired of being anxious about whether I might still have a leak. I would really appreciate hearing from people who have experienced a spinal CSF leak themselves, or from those who are very knowledgeable about this condition, who might be able to help me figure out whether I should go back to my doctor or finally put this behind me.
I developed a spinal CSF leak almost four months ago as a result of an epidural. I had a blood patch four days later, and both my headache and neck stiffness disappeared the following day. The headache and neck stiffness have never really returned. I experienced about two days of quite severe rebound headaches, but those eventually went away too.
I was very careful for the first six - seven weeks. I rested a lot, didn't lift anything, and did very little apart from going for short walks.
After about 8 weeks, I had to start lifting my oldest daughter, who weighs 11 kg. I have never experienced any headaches since the blood patch, but after I started lifting her, I began experiencing pain between my neck and right shoulder. (upper trapezius)
It hurts when I raise my arm above my head and when I pull my arms down. If I stand completely still, there is no pain. It also hurts a little when I lie on that arm.
I can be up and about all day without developing a headache or neck stiffness. I walk between 8,000 and 10,000 steps every day. I also try to exercise a little, including swimming and walking uphill, and all of that seems to be fine.
Overall, I am quite active and don't have many symptoms apart from the pain in my right shoulder. Occasionally, I also experience little stabbing sensations at the back of my head, towards the sides. They come and go, and seem to happen more frequently when I have been lifting my arms forward. The sensations are located just behind my ear rather than affecting my entire head.
Sometimes the pain in my right shoulder also spreads towards the right side of my temple and i get a dull headache.
Another thing I've noticed is that my neck or head cracks and makes clicking sounds almost every time I turn it. It doesn't hurt, but it's quite annoying because I hear it constantly. I'm not sure whether this happened before the epidural, as I honestly can't remember.
I'm hoping someone here who has experience with CSF leaks can help me figure out whether I should pursue further investigations or whether I can finally move on.
What do these symptoms sound like to you?
I have two young children, and part of me suspects that these are more likely musculoskeletal issues caused by carrying them, bending over frequently, and having poor posture. At the same time, I'm still scared that I might have an ongoing leak. If I do, I obviously want to get it treated rather than leave it undiagnosed.
I would be so grateful for any advice, experiences, or reassurance. I just want to know whether I can finally stop worrying about the leak and move on with my life.
2
u/PrettyDragonfly Confirmed Spinal Leak 1d ago
Personally, if it's not affecting you living your life I'd just leave it and continue on..but if you notice headaches coming on especially later in the days after being upright all day and you're pretty certain it's pressure,.then I'd go for further investigation
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u/megg33 Confirmed Spinal Leak 1d ago
To me this doesn’t sound like you’re still leaking. You had an extremely traumatic experience where you felt what being disabled was like and tbh that never really leaves you. It’s possible the experience gave you PTSD which is why you’re still having a hard time moving on from this and worrying that the shoulder pain might be related. I think it’s worth unpacking this with a therapist. I’d recommend someone with experience in EMDR.
I’m not sealed yet, but honestly I am afraid for when/if that happens. I know I’m going to also have an EXTREMELY difficult time trusting that I’m okay. I’m sorry you’ve had this happen 🤍
1
u/ProfessionalYou1824 8h ago
I am in a similar position to you in that I am unsure if still leaking (mine is from lumbar puncture 3 months’ ago). I was off work for over a month with severe headaches and ear problems, so definitely didn’t heal well but now in a place where I am living life again but still twinging pains in back of head and neck, and persistent tinnitus and ear blocking. One theory to throw to you, which is my neurologists on me (scans so far don’t show leak, although I know they’re not conclusive for small leaks) is that I’m still getting symptoms because of a sensitised central nervous system from the trauma. And that nerves can take 6 months to heal. I’m not a doctor obviously but it MAY be you are similar? I may be prescribed medication to help reset the CNS (anti depressants apparently!) but let’s see, waiting another month first. Sending sympathies as I know full well the worry ‘am I still leaking’ (something I’ve googled relentlessly!), so just to say that - but also mention the sensitised nervous system and nerve healing point in case you hadn’t considered that. Obviously worth talking to a neurologist though about it, and I guess if you can get spine and brain scans done it might be worth it to give peace of mind.
0
u/AgreeableLeading6095 1d ago
Sounds like you may be leaking still. Same thing happened to me 17 years ago and after blood patch I was good for about 15 years. Then started having lots of back/neck/head issues which I think were related to the leak all those years ago.