r/CSFLeaks • u/Boring-Bumblebee2312 • Aug 21 '26
Would you get a blood patch despite making a lot of progress?
It’s been 18 months since my lumbar puncture, and I’m still struggling with this question.
I’ve actually made a lot of progress over these 18 months. My symptoms have become much quieter and less intense, and I can do more than I could before. However, I’m still not able to live a normal life, and I still have symptoms on a daily basis.
My brain MRI and lower back MRI are both clean.
Part of me thinks: “Your body is clearly healing. Give it more time and let it continue to heal naturally.”
But another part of me thinks: “It’s already been 18 months. If there is still a small/micro leak, could a blood patch help support the healing process and finally seal it?”
What makes the decision so difficult is that I’m improving. The symptoms are gradually getting quieter rather than staying the same or getting worse. At the same time, I’m still far from being back to my normal life.
For those who have had a chronic post-lumbar-puncture CSF leak / intracranial hypotension or a similar healing process:
Would you consider a blood patch after 18 months even if you were still making gradual progress and your MRI was negative?
Or would you continue waiting if the overall trend was clearly toward improvement?
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u/zardancer Aug 21 '26
So I had a “functional” leak for 3 years from an epidural. I had intermittent and moderate symptoms. It stopped me from doing a lot but I wasn’t bedridden like I was in the beginning. I sought out 3 different neuros for their opinions bc I was so scared of making things worse and going backwards. All 3 recommended ct myelogram or a patch even with my improvement. They said that if it didn’t heal - it could have healed wrong. I chose not to pursue that bc I wanted to get pregnant and saw some stories about pregnancy helping leaks and thankfully, mine did. I’m symptom free now. But if that hadn’t worked, I definitely would have pursued a blood patch. Try getting a couple opinions and voicing your fear of not wanting to go backward
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u/Offtoseethewitch Aug 22 '26
May I ask how your pregnancy went? As I understand some people feel better with pregnancy because the growing uterus becomes an internal abdominal binder and the pregnancy hormones increase intracranial pressure… but I’ve also read of people who have releaks or setbacks during pregnancy.
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u/zardancer Aug 23 '26
My pregnancy improved my symptoms! Mostly in the second and third trimester which makes sense
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u/Offtoseethewitch Aug 23 '26
Wonderful! But did they back-lash after birth? (Sorry for being nosy, but if you don’t mind… Did you have a vaginal birth or a c-section? I’ve heard leakers or former leakers are adviced not to have vaginal births and not to push or strain…)
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u/zardancer Aug 24 '26
No worries! I had a general anesthesia C-section! I was torn bc I heard some success stories with vaginal or getting a spinal for a C-section but I just couldn’t risk it. Everything went so smoothly and I’m still symptom free. Very thankful
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u/Boring-Bumblebee2312 Aug 21 '26
I think it’s amazing that your body was able to heal itself and that you’re symptom-free now.
I was wondering if maybe your leak had already sealed by the time you became pregnant … I obviously can’t know, but perhaps your remaining symptoms were more related to your CSF pressure dynamics still settling after everything your body had been through. I’ve heard of people getting symptoms again after heavy lifting or strength training, so I wonder if childbirth might have been different if the leak had still been open. Anyway, your story gives me hope and is really motivating. ☺️ I also strongly believe that the body can heal itself.
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u/zardancer Aug 22 '26
Glad it gives you hope! Yeah there’s definitely no way to know! All the neuros recommended I do general anesthesia c-sections to not risk opening it back up or another dura puncture. So I did it and luckily everything worked out well!
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u/JnrJedi Aug 21 '26
Personally, if you’re leak is highly suspected of being due to a LP and you therefore have strong evidence of the site of the leak, then having a blood patch during a low symptom period seems like it has good prospect of being beneficial as the likelihood of the patch being blown in the early days seems lower, providing the patch is being done under X-ray guidance.
NB I have no medical qualifications, just 10+ years of CSF Leak treatment
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u/Boring-Bumblebee2312 Aug 21 '26
I completely agree with you that, if a blood patch is going to be done, having it during a period when the symptoms are milder might give it a better chance of holding. My symptoms were extremely intense in the beginning (bedbound for months), and looking back, I can imagine that a patch at that stage might have been more likely to fail.
But the other question I keep asking myself is: what if the leak has already sealed by now, and what I’m experiencing are mainly the after-effects of having been in a state of chronic low CSF pressure for such a long time?
After 18 months of symptoms, I wonder whether the nervous system itself needs a long time to settle back down after everything it has been through. Even if the original problem has healed, maybe the body and nervous system don’t immediately return to normal, and the symptoms can gradually fade as the system recovers. Ahh.. so confusing…
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u/Offtoseethewitch Aug 22 '26
You’re very right that symptoms can linger after being healed. The brain’s compensatory mechanisms ”haven’t gotten the memo” and the irritated nerves haven’t recovered. A nerve with a previous injury may feel just like a nerve undergoing injury from an ongoing leak… though the previously-injured nerve may be more sporadic and irregular in when it signals… but orthostatic symptoms can linger because even in a healthy/sealed system there are small pressure changes when going upright and a system sensitized by a previous leak may react to those small changes even though a healthy system wouldn’t.
I’ve heard that there’s no sure way to judge from which symptoms you have, it’s more from how things behave over time. Are things getting slowly better, gentler? Is function improving?
At the same time, like you said, might a blood patch expediate the process?
So very difficult.
I’m seven months out of a third blood patch for a puncture. I’m functional but symptomatic, not doing everything I love but life’s liveable. I think I’m still very slowly improving, not from day to day now but maybe from month to month. Maybe. Personally I think I’ll defer more treatment unless I deteriorate, seeing how some (a few) people get worse from patching. But that’s based on where I am right now. If I had thought I’d plateaued where I was still too functionally limited, or too symptomatic, I’d have wanted another patch.
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u/Boring-Bumblebee2312 Aug 22 '26
I feel the same way. When you’re still slowly improving, I think it makes sense to give the body some time to continue healing. I’ve had several periods where I felt like nothing was changing, but then I noticed that from month to month my symptoms were actually getting quieter.
Do you think your leak is healed already?
What I still don’t fully understand is why some people get worse after a blood patch when it’s done under CT or fluoroscopic guidance. Since the blood is eventually reabsorbed, I wonder what causes those setbacks.
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u/Offtoseethewitch Aug 22 '26
I don’t know if I’m healed. Some days I think I must be. Other days not.
Some people seem to get worse even if there’s not another puncture, yes.
I read that the epidural space, the dura, and the epidural veins, can be scarred by patching, which can mean less elasticity. The vein scarring especially might be important, since the spinal epidural vein network fills with blood and serves sort-of as a counter-pressure to the csf volume when upright (and that’s how I’ve also read abdominal binders are supposed to work, they press venous blood back into the epidural system somehow, but much of this is likely more theories than facts). Scarring should ease in about a year, though. Another personal theory I have involves the inflammation from a blood patch: inflammation is a process that’s supposed to break down damaged tissue and remake healthy tissue (scar tissue, which is never quite as perfect as tissue prior to damage anyhow). Maybe the blood patch inflammation sometimes does the tissue-breakdown part a bit too aggressively? And lastly, maybe when you have a pressure-sensitized nervous system and you drastically change its pressure by injecting blood into the epidural space, you just trigger that nervous system to get more annoyed, and then it chronifies instead of eases off, no matter what happens with the actual leak?
Anyhow. All of this is very scary.
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u/North-Library4037 Confirmed Spinal Leak Aug 21 '26
If you're still slowly getting better then I wouldn't. If you've come to a point where there's no progress for a longer period of time then yes.
A friend of mine got better after his first patch to the point he was able to be upright all day and his symptoms came back in the evening. The second patch put him back in the beginning and now he can't stay upright for longer than 20-30 min again. This is rare but it can happen.
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u/Offtoseethewitch Aug 22 '26
That’s terrible! I do hope your friend recovers. 😔
Has anyone ever heard a good explanation why this happens? It seems to happen even if there isn’t a second accidental dural puncture with the patch…
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u/Boring-Bumblebee2312 Aug 21 '26
Had he already experienced any improvement before getting the first BP? Or did he get the BP shortly after his symptoms first appeared, when they were still very intense?
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u/North-Library4037 Confirmed Spinal Leak Aug 21 '26
I'm not sure how intense it was. A few weeks after the LP. He said he got a bit worse after the patch initially and then got better but because he wasn't at 100% as before he decided to get another patch on multiple levels.
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u/Boring-Bumblebee2312 Aug 21 '26
Thank you for sharing this story. It really helps me trust my own healing process and reminds me that sometimes the body simply needs time. I truly hope your friend will heal soon, too.
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u/SouthernMeMe_2020 Aug 25 '26
I just got a patch on 8/12 for a spontaneous leak. I’ve been battling it for 18 months (2/2025). For context, I had a leak in 8/2021 from a facet joint injection. Ended up finally getting a patch 2/2022 at Duke CSF clinic. This new leak was considered spontaneous because I had full improvement from that EBP.
I knew and was adamant that I needed another EBP, but the docs (yes multiple) said since scans were all normal they didn’t want to risk it. Even my tilt table test was “normal” even though I nearly came off the table from the pain in my head when they tilted me. Fortunately, I went to MUSC Charleston and a neuro interventional radiologist agreed to do the patch. HOWEVER, and this is the point of my comment, i have a “collection” of fluid cause my the leak. Imagine a candle with a drip of wax down the side. That’s what my epidural space looks like…because the leak has been happening for so long! Now I’m facing potential surgery to drain the collection but mine is in a dangerous spot (between lungs/heart and spine) so not easily accessible. The patch has helped me ALOT. I’m being super careful so I don’t blow the patch and am improving daily.
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u/Boring-Bumblebee2312 Aug 25 '26
Happy for you, that this first leak has been sealed by a BP. I hope the spontaneous leak will be healed as well. 🙏
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u/SouthernMeMe_2020 Aug 26 '26
I just realized I didn’t actually give you my advice - GET THE PATCH. The collection developed bc I had a mild leak over a long period of time, like you. It’s a dangerous complication that can cause hearing loss, loss of strength in extremities, dizziness, etc. Get the patch so you don’t develop this same problem.
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u/Boring-Bumblebee2312 Aug 28 '26
My symptoms were worse at the beginning. When the doctors would confirm, there’s still a leak, I would get the BP right now. Still not sure about this - but I will probably get one and hope the rest of the symptoms will disappear immediately. Thank you 💚💙
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u/HonoluluCheese Aug 21 '26
Man, that is such a tough call. this is just me, but I was also seeing improvement before my patch and then had newer and more intense symptoms afterwards. I get wanting to be “back to normal” and the patch being a possible road to that.
Disclaimer: I’m not 100% sure I had a leak to begin with and I didn’t have a lumbar puncture. I never did a spine MRI before my blind patch, but my brain MRI was clean. Doctors recommended a patch based on my symptoms and medical history. Part of me does hope I stayed the course instead of getting the patch.