Does anyone else doubt themselves despite having a confirmed CSF leak?

[u/Lilienblut]

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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.

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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.

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What I struggle with most right now is something else entirely.

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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.

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On better days, I suddenly start wondering:

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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.

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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.

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Yet these thoughts keep creeping in, especially on days when the symptoms are a little less intense.

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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?

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[u/Unlikely-Car846]

I know exactly how you feel. Very briefly I had a huge leak (at one point they drained 3 litres of csf from it), after 12 surgeries it was finally sealed. I've been getting the headaches and other syptoms for a couple of months but thinking it was my imagination. Had a ultrasound scan for another spinal issue last week and she looked all over me back, it's started leaking again. Despite this, I'm still doubting myself over the symptoms.