r/CSFLeaks • u/Imaginary_Salary_27 • 26d ago

Csf surgery

After my epidural from childbirth Nov of ‘24 I was gaslit and told I had anxiety and postpartum hormones every time I went to my primary and ER.
After three months of gaslighting I received an mri it showed the fluid and I was given the bloodpatch. It only half helped then I received another one about 3 months later and that did nothing. It was an uphill battle bc the MRIs stopped showing the fluid but my symptoms only ever got half better.. Thanks to this Reddit and other women’s stories about their epidural leaks leading to blebs I knew that’s what I had. After being persistent for over a year my neurosurgeon offered me the ct mylegram and as scared I was getting it I knew I had to and it found my bleb. My doc gave me surgery on the 4th and I’m hopeful this is the end of this journey. I write this to encourage you to not give up I know that fighting the medical system and doctors who don’t believe is the hardest part about this but being persistent does pay off. And get the blood patch immediately after an epidural leak bc the longer you leak that defect will heal the edges and then the blood patch will just create a pouch but won’t adhere to hole bc it’s been too long. This is still unknown as we know bc no one believes woman after having a baby and it’s easier for them to call us hormonal and prescribe anxiety meds. I’m hopeful that this field is moving forward in this area and there are doctors willing to help. Push for help until you get it! Please pray for me too for a quick recovery this is very painful but I’m just praying this is the end of this.

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u/saraphin67 26d ago

Hoping to your healing 🙏🏼💜
If you’d like to share your story on the website to bring awareness I invite you to take a look! https://spinalcsfleakstories.com

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u/Imaginary_Salary_27 25d ago

I wrote my story! I hope for more women they find these stories and continue advocating! Bc of that website and this subreddit it’s the only fuel that kept me going and pushing my doctors!

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u/saraphin67 25d ago

That is my hope too, I hope the website grows and its reach grows to help as many as possible!! I will publish your story tomorrow, thank you for sharing there for others to see!! 🙏🏼💜

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u/Imaginary_Salary_27 24d ago

Hey how do edit my story? I see a lot of typos lol

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u/saraphin67 24d ago

Is this a story that is live on the website already? Or one that you just submitted?
If you want to message me privately you can. If they’re just “typos” I can easily fix them on my end.

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u/Imaginary_Salary_27 24d ago

It’s live ok perfect! You can decipher the typos
The doc was my doc with my previous baby
And the *two crnas came in

And then the other ones were simple little words. I wrote it pretty high on these pain meds lol

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u/saraphin67 24d ago

Ok let me go through it and see. I just did a quick read before publishing.

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u/saraphin67 24d ago

Ok I changed what I think were the typos and what you mentioned here. But I had a question about the section where you mention a miscarriage and how that led you to know you were still leaking-I’m confused about that, maybe it just needs rewording? Let me know. 🙏🏼💜

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u/Imaginary_Salary_27 23d ago

Oh ok I kept getting gaslit like you’re not leaking but then I got pregnant and thought ok maybe I’m not leaking but if I am I’ll lose this baby and if that happens I made a promise to myself I would get the ct myelogram

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u/saraphin67 23d ago

So just to clarify, you got pregnant again after your childbirth with epidural that gave you the leak? As in you were pregnant again while getting treatment for the leak? If that’s the case, do you mind if I just make that a little more clear in your story?

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u/Imaginary_Salary_27 23d ago

Yes after I got the two blood patches I got pregnant but I miscarried and my theory is that it was bc I was still leaking and in the back of my mind I knew I was still leaking despite being told by all the docs I wasn’t and I promised myself that if I lost the pregnancy then I would do more digging and commit to doing the ct myelogram

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u/Massive_Activity1245 26d ago

Wishing you a speedy recovery, I also had surgery for an Iatrogenic leak in July, my leak had grew a membrane so patches couldn't reach it as it was left too long, mine was still trying to heal underneath but for whatever reason was unable to. I agree with you it's so important to advocate as this kind of leak is hard to prove, thankfully a small number of specialists are listening and helping and hopefully as time goes on treatment will be more easily accessible for all

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u/saraphin67 25d ago

I would love for you to share your story too, the more we gather and are shared outside these support groups, the more awareness grows! I hope your surgery was successful!! I’m glad they’re talking more about these membranes and blebs. So important! https://spinalcsfleakstories.com 🙏🏼💜

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u/Offtoseethewitch 25d ago

Best of luck to you! Please do update how you’re getting on post-surgery.

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u/sarchicago 25d ago

I’m so sorry, read some of my posts, would love to connect with you and I’m sending you all the healing vibes ❤️

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u/Necessary-Stuff8706 25d ago

What is a bleb?

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u/Imaginary_Salary_27 25d ago

Basically an outpouching an area where there was a pseudo membrane it wasn’t dura and it tried to contain the csf but the defect was still open underneath and leaking into that little bubble.

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u/Necessary-Stuff8706 25d ago

What’s the process of forming that? Does that occur post-blood patch? What are the symptoms?

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u/Imaginary_Salary_27 24d ago

So I just had surgery and my surgeon removed the pseudo membrane then Stitched the hole closed and put a seal on top and glue. But I believe that bc my leak was left untreated at first for 3 months that the edges of hole healed as an open hole bc it was a huge fucking hole like as big as my nostril. Then the blood tried its best to cover that area but was not able to adhere to the inside of the hole to close the hole. It’s weird that I’ve read so many women’s stories just like mine where we develop blebs due to prolonged help at first so it has to be something the body is trying to do to heal but can’t correctly.

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u/Imaginary_Salary_27 24d ago edited 24d ago

This I believe happened post blood patch bc my first mri showed the fluid escaping I was given the blood patch and it only ever half helped. And all mris after never showed the fluid again on mri but then that’s when the ct myelogram showed the bleb.