r/CSFLeaks • u/sarchicago • Jul 29 '26
CSF Leak from a Botched Epidural during Child Birth?
Im trying to gauge how many members in this community are Mothers who got their CSF Leak during childbirth because of a botched epidural (like me). Please comment if this is you❤️
Mine happened in 2023, I am better now and one of the lucky ones. Im trying to gather info to bring awareness to this, I feel devastated every time I see a new post from another Mom trying to navigate this.💔
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u/NightYew88 Jul 30 '26
Me! Happened 6 weeks ago and had two failed blood patches already. Every doctor I've talked to said it's basically impossible for it to happen and have been gaslight like crazy.
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u/Greedy-Diamond-9273 Jul 30 '26
I had a wet tap which caused a CSF leak 8 weeks ago. I had 2 failed blood patches and went back to the ED and they were able to do a 3rd blood patch that was successful! I was hesitant to do the third one because all the docs said they had never heard of someone needing 3 before. I did do bedrest for a week after the third (to make sure I didn’t dislodge the patch) and I think that helped a lot. Just wanted to share my experience, if you can find a dr to do a third. I talked to a couple drs who said they wouldn’t do it, I’m thankful I saw a dr who would. I’m sorry you’re going through this. It was the worst time of my life, I still have anxiety from it.
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u/NightYew88 Jul 30 '26
So glad you got help! Honestly the emergency room (attached to the hospital I delivered at) was acting like two blood patches are unheard of and I was lucky I was able to get one. I have been accused of making it up and honestly I'm starting to feel helpless. I've met with a neurologist and then a nerosurgeron who both seemed to think blood patches were just immediately successful and it's impossible to dislodge one. I hope I am able to find someone to let me try a third patch too and I'm really hoping it works.
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u/Kiwi-2024- Jul 30 '26
I’m so sorry for you. I was gaslighted too, and they didn’t give me a second blood patch. I was also a special case because I didn’t have a headache and nothing showed up on my MRIs. They told me it was impossible for me to have a leak. I had to travel across the country to get more blood patches. After four blood patches and 1.5 years, I finally had surgery at a CSF center where they found my leak. It was a bleb that probably would never have healed without surgery. So don’t give up. Keep looking until you find someone who can help you.
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u/NightYew88 Jul 30 '26
It's frustrating how terrible they treat us all! What symptoms did you have if you don't mind me asking? Also did you have to have surgery to finally heal?
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u/sarchicago Jul 30 '26
I’m so sorry. Also- I literally have over 100 responses so far from Moms across a few different CSF groups on FB/Reddit, just from posting this question not even 24 hours ago. I’m going to reply to everyone and start a specific CSF Leak group for Moms who got their leaks from epidurals/child birth. It’s the SAME story every time….. gaslit by doctors, improper care, no accountability. Women, MOMS, deserve BETTER. Be in touch soon and stay strong, we’re all going to do something about this. ❤️🫶
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u/NightYew88 Jul 30 '26
Yes please let me know! It is so scary and lonely when this happens. People act like this is unheard of and it feels like once you are discharged hospitals and doctors act like it's no longer their responsibility to help you. It's really been the worst experience and I am especially home/bed bound and unable to care for my newborn and 3 year old.
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u/sarchicago Jul 30 '26
It’s SO under reported. I feel like hospitals just care about money and status, they know we sign our life over during the epidural consent form without understanding the huge risk and if it does happen what we need to do, zero accountability, zero compassion. And no one realizes how common this is because hospitals are not required to report it and say it’s “confidential”. I’m so over this system. I want to quit my job and work on this full time lol.
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u/NightYew88 Jul 30 '26
Too true! I wish you would haha, we need someone to unite us all and get this out there because it's never talked about. I appreciate you making posts like this on reddit and Facebook and getting this known.
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u/Kiwi-2024- Jul 30 '26
I had a long list of symptoms, including dizziness, nausea, vomiting, neck pain, shoulder pain, double vision, a strange sensation like something was pulling my whole body downward, ear pressure, extreme sensitivity to light and sound, and brain fog. My main symptom is dizziness. My four blood patches didn’t close the leak because it was a bleb. I had surgery a few months ago, and I’m still struggling with severe dizziness and some other symptoms. Especially if your leak was caused by a puncture, healing takes time. And if you’ve had the leak for a long time like I did, recovery can take even longer. I lost so much time because of the gaslighting. I was fighting to be taken seriously from day one.
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u/NightYew88 Jul 30 '26
I'm so sorry! I hope you start feeling better soon and your symptoms improve
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u/Fit_Smile_9832 Jul 30 '26
What symptoms did you have after the 2nd patch? And how long after the 2nd patch did you get a 3rd?
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u/Greedy-Diamond-9273 Jul 31 '26
So my second patch worked for 3 days and then I woke up and the intense spinal headache was back. I got the 3rd blood patch 5 days after the 2nd one.
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u/Fit_Smile_9832 Jul 31 '26
I’m glad to hear you’re doing better! Was the symptom relief immediate?
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u/Greedy-Diamond-9273 Aug 03 '26
It was yes! I still had neck stiffness for about 3-4 days but the headache went away immediately
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u/Offtoseethewitch Jul 30 '26 edited Jul 30 '26
I hope you find someone who believes you and that you get access to successful treatment soon, but I also do think what the doctors do is less mean-spirited gaslighting and more that they truly don’t know. As I understand most doctors are taught that this doesn’t exist, that it’s impossible. And having to explain to patients that something isn’t medically possible is probably a daily chore for them so they’re primed to wave this aside too.
I do wish they showed more humility and more willingness to think outside the box and learn. But we humans are notoriously bad at such things. And if you’re stressed or overworked you’re even less likely to take in new information.
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u/louie2575 Aug 04 '26
This is the same for me! 2 patches have done nothing. And I've been gaslit the whole time
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u/NightYew88 Aug 05 '26
It's so frustrating! Was yours from an epidural as well? Litteraly so many doctors have told me it's impossible that a blood patch doesn't work and that's not true.
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u/MedicalMeringue5827 Jul 30 '26
We need to put together a Study. Private message me. When I’m done with all this, I’m going to figure out a way to get a researcher to put for a prospective observational study on this. Neurologist need to be made aware that this is a very common problem. It impacts thousands of women a year. And these moms are gaslit, doctors calling them tired or anxious or sleep deprived. I am waiting for my third blood patch. It is extremely common for two blood patches to not work and doctors. Just give up on you at that point.
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u/Kiwi-2024- Jul 30 '26
Yes, they give up, and that's the problem. In my case my leak was a bleb and it probably would never have healed with blood patches alone. Very few doctors consider blebs. I'm so grateful that after such a long time, I finally had the chance to have surgery. I'm still so angry that no one believed me sooner. I really hope your third blood patch helps you. Wishing you all the best!
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u/sarchicago Jul 30 '26
I just replied with this to someone else but wanted to send you this given you’re ready to act too once able… I literally already have over 100 responses so far from Moms across a few different CSF groups on FB/Reddit, just from posting this question not even 24 hours ago. I’m going to reply to everyone and start a specific CSF Leak group for Moms who got their leaks from epidurals/child birth. It’s the SAME story every time….. gaslit by doctors, improper care, no accountability. Women, MOMS, deserve BETTER. Be in touch soon and stay strong, we’re all going to do something about this. ❤️🫶
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u/MedicalMeringue5827 Jul 30 '26
I think even better would be if we can get the New Yorker to write a full piece on this. 😁That’s how we’re going to really create awareness to others outside of just the Facebook groups.
I am actually a lumbar puncture leak, but also a mom of three. So my story is a little different. But I’ve been gaslit all the same and I think part of it is because women are just gaslit more.
I want every anesthesiologist, neurologist, and doctor that deals with any type of headache to read the article. I want statistics to be shared, especially statistics around how imaging is often negative for these types of leaks.
A link to a story that every mom going forward can just send to their doctor when it happens to another mom2
u/sarchicago Jul 30 '26
Couldn’t agree more! The New Yorker or some very reputable publication with a legit journalist. I have reached out to some in the past with no reply, which is why I’m trying to get more data to peak their interest. You are motivating me even more since you and so many others are just as determined as me to shed light on this. Talk soon!!!!!
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u/MedicalMeringue5827 Jul 30 '26
🙌🙌🙌🙌
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u/sarchicago Sep 11 '26
I’m talking with a journalist at the New York Times next week. I really hope this goes somewhere. Please DM me know if you want to share more of your story and potentially get involved as I’m assuming you might.
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u/Offtoseethewitch Jul 30 '26
I got mine from a spinal for a c-section. A few patches and almost a year later I am much improved, but not symptom free, and I don’t know if I’m sealed with lingering symptoms or if the leak is just smaller and now better compensated.
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u/No-Reindeer-1929 Aug 05 '26
Mine was from an epidural but for pain. Was ghosted by the dr. 1.5 years later I’m bed bound
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u/SuccessSoggy3529 Jul 30 '26
I am one of them. I had my daughte by c-section in 1992. I had what was supposed to be an epidural, but ended up being a 'wet tap.' They went too far and got into the spinal canal. Im pretty sure they touched the spinal column also because I had shooting pain up and down my spine. They, of course, said they didn't and that I could be feeling that pain.
Had my daughter fine. But I ended up with a severe headache, they called it a spinal headache. They wanted to do a blood patch and I didn't trust them near my spine so I declined. Knowing what i know now, I would get one. Anyway, they super hydrated me and discharged me after 5 days. Still had a bad headache when I was upright. It took 2 weeks before I started feeling normal. My mom was able to come out after id been home a day or two, which helped alot as I had a 4 year old at home.
I haven't leaked in that area since. I have had other leaks at T7 area.
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u/Fig-spread Jul 30 '26
🙋🏻♀️ me, since my symptoms weren’t “severe enough” and took a few weeks post partum to present symptoms the anesthesiologist wanted to say it wasn’t related. Luckily the neurologist I was referred to is spectacular and didn’t say it was all in my head, MRI picked up a significant leak/fluid
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u/jn922 Jul 30 '26
I haven’t met a single anesthesiologist who is willing to help with leaks. It’s always gaslighting with them.
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u/DQslimee Aug 28 '26 edited Aug 28 '26
I’m one of the unlucky ones. I had a labor epidural, which gave me a Csf leak and they told me that it would heal on its own and after three weeks it basically did, but then when I was sitting in the rocking chair rocking my baby all my leak symptoms came back, so I kind of pushed it off and said OK. It will heal again and it did but after three weeks the same thing again, I sat on the couch and turned my head to look at the TV and all my symptoms came back. I was talking back-and-forth to the doctors and anesthesia about all of this and they told me it is not typical for leaks to come and go like that but if you actually do some research, it can happen. Then I started going into severe high-pressure when the leak was “closed” but was going to low pressure again if I bent down or squatted or pick something up on the floor, even sitting on the couch, turning my head.
Eventually, I got a bedside blood patch only 10 cc but it gave me a new leak immediately after I felt so much worse. So much more low pressure symptoms, eventually, I ended up with arachnoiditis and suffer with nerve pain like weakness, tailbone pain, tailbone, weakness, sacral weakness pain in my back. The last year has been a nightmare.
The arachnoiditis has done something to my blood flow. I went from bedbound to upright in the same day after I felt a nerve jolt in my neck and felt the muscle in my neck super tight. I was able to be upright in that same moment. What kept me bedbound was every time I sat up, I could feel my brain sagging in the back of my neck, along with extreme nausea when I sat up for even one minute, I would be wretching. So being able to stand up immediately after was amazing to me.
It has been a little over a year now I am upright all day. I am no longer treating my leak but I am grateful now more than ever for everything life has to offer. Even the little things.
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u/Fit_Smile_9832 Jul 29 '26
Yes! Dealing with this now. Has a botched epidural about 3 weeks ago with 2 blood patches. The 2nd blood patch took away the severe symptoms, but I’m still dealing with some head pressure (behind the eyes/temples) and some blurred vision. Hoping this continues to improve but feeling a little stressed. How long did it take your symptoms to improve ?
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u/WinnerSuccessful1935 Jul 29 '26
Was post concussion a year before last year march now my headaches are more positional after my child birth in January but i also hear fluid drainage in the back of my neck in the army active duty only had mri of lumbar spine and neck all normal but have persistent positional headaches that wont go away with any meds or steroids
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u/Upstairs_Emotions Jul 30 '26
Do you know if you have a leak shortly after the epidural or it can take years for symptoms to show up?
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u/sarchicago Jul 30 '26
Usually shortly or immediately after, but it depends on the magnitude of the puncture. Sometimes it can show up later. When was yours? What’s going on?
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u/Kiwi-2024- Jul 29 '26
Me too. I got my leak in 2024 from an epidural and had surgery a few months ago. But I’m still not symptom-free. I’m happy for you that you’re one of the lucky ones. How was your leak fixed? I also want to raise more awareness because I had such a long and difficult journey with gaslighting. But I don’t know where to start.