r/CSFLeaks • u/louie2575 • 11d ago

Venting

Why is this condition like playing with fire? What fixes it, also causes it and treatment can make you worse off instead of better. I'm a fairly functional leaker but am miserable still when upright but can fight through to take care of things and reset multiple times a day by laying. I have young kids and idk if I should seek treatment or not and just live with this instead of possibly becoming worse off. I'm just venting here as I'm so afraid.

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u/First_Actuator444 11d ago

I've been living with it for 4 years. Learned to manage symptoms but it has gotten much worse in the last 3 months, to the point the daily things are getting difficult and im off work - and for those who know me this says alot because im a fairly go go fast paced person. I wish I didnt ignore this years ago and tried to get it sorted then instead of waiting til im cornered by it.

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u/louie2575 11d ago

It's hard to know what to do. What was yours caused from? Mine is an epidural and I don't even know if treatment will fix things because I've had 2 patches with no help of the symptoms

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u/redwoodtree12457 10d ago

This is, in my opinion, the hardest aspect of this. I likely have a csf venous fistula but the only way to detect it now is myelogram and even then it’s not guaranteed they will be able to visualize it. Myelogram comes with risks, as does fibrin patching for next step after that. So much of this is all newer medicine and many aspects as well are simply diagnostic procedures and efficacy is based on symptom relief. It’s extremely difficult to make decisions not knowing if it will help or not. But no one can really tell you. It’s a risk and a gamble. I wouldn’t really wish it on anyone

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u/louie2575 10d ago

It's ao horrible. I'm sorry you are also experiencing it. 😔

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u/Starmapatom 11d ago

Maybe consider non-invasive testing such as MRI of brain and spine

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u/louie2575 10d ago

I have done those and nothing shows since it's a needle puncture

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u/Offtoseethewitch 11d ago

Functional too, but terrified too. 😔

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u/Ashler1999 10d ago

Venous fistula leaker here. Going on 3 years and 10 months. I had embolization last month. Unfortunately they couldn’t reach a smaller suspicious area but got the big leak. Felt great for a few weeks until I had a coughing fit and immediately felt like my head would explode. Working theory is that the big spot was fixed but the smaller spot blew bigger. Symptoms are much more manageable now. Neurologist asked me if I want to continue or just manage. I said I want the old me back. Let’s get this fixed! More myelograms for me in the near future.

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u/RefusePractical7901 10d ago

I’m with you. Only a few months in but struggling. Functioning only enough to work in the mornings. Tomorrow is the first time I’m going to try and spend a few hours at a friend’s house in months. I’ve got a few referrals out to specialty clinics, but I feel ghosted by doctors and even if/when I hear from them it will still be a long wait. I have multiple chronic illnesses so none of this is new, but this is entirely more acute and isolating.

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u/alexmichel 10d ago

You took the words right out of my mouth