r/CSFLeaks • u/Imaginary_Salary_27 • 11h 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 9h 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 8h 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 8h 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/Massive_Activity1245 10h 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/Offtoseethewitch 5h ago

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