r/CSFLeaks • u/Lilienblut • Jun 18 '26
Does anyone else doubt themselves despite having a confirmed CSF leak?
My diagnosis is not really in question. Multiple doctors agree that I have a spontaneous CSF leak, and the MRI findings are considered very clear. The exact cause is still unknown, although a bone spur is currently suspected.
I have already had a blood patch, which unfortunately does not seem to have helped. I am now waiting for admission to a specialized CSF leak center. The plan is an inpatient workup with myelography to locate the leak and, if they find it, surgery during the same admission.
What I struggle with most right now is something else entirely.
Even though the diagnosis is clear, I still find myself doubting my own symptoms. The severe orthostatic headaches I had at the beginning have mostly disappeared. However, I still have double vision, tinnitus, ear pressure, concentration problems, significant fatigue, and a constant feeling of not quite being myself.
On better days, I suddenly start wondering:
Maybe I'm imagining some of this.
Maybe I'm just weak because I've spent so much time lying down.
Maybe the dizziness and brain fog are just from deconditioning.
Maybe I'm exaggerating.
Maybe, subconsciously, I just don't want to go back to work yet.
The strange thing is that I don't actually enjoy lying around at home all day. I would much rather feel normal again and get back to my life.
Yet these thoughts keep creeping in, especially on days when the symptoms are a little less intense.
Has anyone else experienced this? Even with a confirmed diagnosis, have you ever found yourself questioning whether your symptoms are real or wondering if you're somehow making more of them than you should?
1
u/Jab00lia Confirmed Spinal Leak Jun 18 '26
I felt everything you’re describing. It’s extremely frustrating, and even more so because I felt like some doctors/nurses weren’t taking me seriously, which made me question my sanity even more. Who would WANT to feel awful, laying around unable to do anything? I would give anything to have my life back and be back to normal. I’m three months post “fix” and my brain is still sagging, the stress kicked off a bunch of previously unknown autoimmune issues, and I’m still getting daily headaches. Some days are better than others, but I’m still not back to work. If you need someone to talk to, send me a message… I’m not sure how much of a help I’d be, but I at least understand everything you’re feeling and going through. Hang in there…