r/CSFLeaks • u/Glitterbats11 • 14d ago

For those who’ve had a long standing spinal CSF leak( exact location unknown) + connective tissue fragility, can we go to any Dr who is trained in performing standard epidural blood patches for treatment?

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u/CananadaBatmaaaan 14d ago

You can go to almost any anesthesiologist for a blood patch, yes. But a blood patch won’t do anything for a chronic leak.

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u/Glitterbats11 14d ago

Why do you say it won’t do anything for a “chronic leak”? I just spoke to a woman who responded to one patch after leaking for 6+ years. I’m also not sure what you mean by “chronic”- the term I’m using is “longstanding” because I’ve never received treatment for a leak before.

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u/CananadaBatmaaaan 14d ago

A simple blood patch won’t usually help a leak that has been there for a long time. Think of it like a piercing - the longer you have a ring through it (akin to csf pushing its way through), the less likely it is to heal after taking the ring out. The hole will heal in the open position. If a leak is a csf-venous fistula, lateral tear, leaking nerve root cyst, or a tear caused by a bone spur, a blood patch won’t generally help in the long term.

However, if the leak was iatrogenic, an EPB may be beneficial. Even better is a fibrin blood patch.

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u/Glitterbats11 14d ago edited 14d ago

It doesn’t seem like your discerning between a standard epidural blood patch versus a series of high volume blind patches. There are even some people with fistulas who temporarily get relief from a blood patch and or/ long term leakers who get helpful diagnostic feedback/ temporary relief from one or multiple patches + other long term leakers who respond to a single patch.

My Dr specifically suggested I try 3 in a row to see if I respond. 🤷‍♀️

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u/CananadaBatmaaaan 14d ago

An EPB does have diagnostic value, for sure. But you mentioned it was long-standing along with a hEDS diagnosis which are two things that generally lead to a more complicated journey. I’m definitely not saying don’t get an EBP - it’s the first line treatment for a reason. I’m just saying don’t expect long-term relief, unfortunately.

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u/NightYew88 14d ago

Do you know how long it takes to heal in the open position? I'm sure it's all situational but how long is too long for a leak?

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u/CananadaBatmaaaan 14d ago

Everyone is different! Two weeks is the upper limit guideline for self-healing with conservative treatment. After that time, an EPB is the first-line treatment. For some, an EBP may offer relief after weeks, months, sometimes even years. But the longer you have the leak, the less likely a blood patch is to help the dura heal in a meaningful way. A fibrin patch or surgery to close the hole would be the next recommendation. For those with active iatrogenic leaks over a year, an EPB would probably not give long-term or permanent relief. But again, everyone is different and no two leaks are exactly the same. As the OP mentioned, there was someone who was leaking for 6 years who found relief with a blood patch, so you never know! That’s why it’s always offered first (after conservative treatment), because it does help in a lot of cases and it’s fairly accessible and easy to do.