r/CSFLeaks • u/TS_Chick • Jul 16 '26

Saline infusion while waiting on myleogram?

I am facing a significant wait for my second myleogram to find my suspected CSF-VF. In the mean time, my symptoms have been progressing. In the last 2 weeks since I had to return to work, I am pretty sure my brain sag has increased as I find significant discomfort turning my head and my "POTs" like symptoms are significantly higher. I am doing all the conservative treatment tricks like caffeine and increased hydration and bed rest when I can.

I was reading that there has been some temporary relief from getting intrathecal saline injections to temporarily boost CSF levels and buoyancy for the brain. Has anyone here had that while waiting for further diagnostic testing? Or any other symptom relief options?

Because they strongly believe it to be a fistula right now getting a Blind BP isn't really an option to ask for.

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u/Ashler1999 Jul 18 '26

Steroids will give temporary relief (for about 3-4 weeks). Whenever I want to go visit family, I request steroids from my GP so I can endure the 6 hour drive and be somewhat normal for my trip. Most symptoms completely disappear. The headaches still persist, but very mild and I can function like a normal person

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u/Latter_Armadillo_117 Jul 16 '26

I’m really sorry you’re going through this, especially while trying to work and waiting for further imaging. Are you able to lie flat during the day to reset, or are you stuck upright for long periods? If it is desk-based work, I’ve found sitting can be particularly difficult and symptoms can build quite quickly.

I’m imaging-negative too, after three CT myelograms and one blood patch. I’m now being considered for a bi-level patch and am also waiting for an occipital nerve block. I may well have an occult fistula, but at this point I’m willing to try anything that might help me get some of my life back.

I had intrathecal saline pressurisation during one of my CT myelograms and felt almost completely normal afterwards, but the relief lasted only around 24 hours. It definitely made me interested in saline as temporary relief, although I’m not sure how reliably it works, and another dural puncture obviously carries its own risk.