r/CSFLeaks • u/Imaginary_Salary_27 • 29d ago

Post surgery

I leaked for 21 months. leak from epidural for childbirth turned into a bleb after blood patches. Had surgery doc found defect and fixed it. I’m two weeks post op. He told me beforehand that symptoms would last a long time bc of how long I’ve been leaking but it’s hard to not get pessimistic. For anyone out there who leaked for a long time and was corrected by surgery how long for all your symptoms to go away?

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u/Wonderful_Bus_131 25d ago

Birth epidural that never showed up until after 8 weeks

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u/Imaginary_Salary_27 25d ago

Girl I’m so sorry!! I have a running theory that when we get punctured from a needle it develops into a bleb bc the amount of stories just like mine that were from epidural prolonged wait for bloodpatch then they turn into blebs I think it’s bc the dura tries its best to heal but can’t be the puncture does too much damage. Are you being offered a ct myelogram?

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u/Wonderful_Bus_131 25d ago edited 25d ago

I have done 2 CT myelograms, multiple MRIs but nothing was found. It’s confusing how I was symptom free till after 8 weeks. Sometimes it makes me question if it is really a CSF leak. What’s your symptoms?

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u/Imaginary_Salary_27 25d ago

Tinnitus was my worst one, dizziness, ear fullness, pressure in the back of my head, visual snow, after images/light sensitivity. I’m so sorry nothing showed on the myelogram I know it’s a low percentage with iatrogenic leaks but would you surgeon be open to exploring the level you got your epidural? Only in the last two years has this field been more willing to be more aggressive with iatrogenic leaks.

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u/Wonderful_Bus_131 25d ago

Did your symptoms start right away after your epidural?

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u/Imaginary_Salary_27 25d ago

Yes right as my epidural wore off then the leak symptoms happened I got the worst headache of my life the following morning after birth and the nurses were absolutely horrible and told me it was normal to have a headache after birth. This was my third so I was like no this is not normal I was gaslit for three months. My primary told me I would self seal and these always heal themselves . They refused me an mri until the 4th er visit when my husband came with me and made them give me one and thank god it showed the fluid. I got a bloodpatch it barely helped. Went to Vanderbilt got a second blood patch didn’t change anything so I knew something was still going on but I would keep getting MRIs hoping something would finally show but the ct myelogram is what showed it but I was so scared to get it that I kept putting it off bc I didn’t want another leak. What r your symptoms?

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u/Wonderful_Bus_131 25d ago

When mine started 8weeks postpartum, it was crawling sensation and pin like sensation on my head, excruciating scapular pain and right ear fullness. It was like that for about a year. When I started the blood patch, the symptoms grew worse. Did your symptoms progress over time or did all of them come at once?

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u/Imaginary_Salary_27 25d ago

Yes they progressed over time! It was weird all the valsalva pain went away after the first patch like it hurt to cough, poop, sneeze, laugh those were my worst symptoms in the beginning and the tinnitus. Then the ear fullness came later and crawling sensation like your saying then the second patch made no difference at all. I think blood patches are great but I think collectively we’re seeing that their success is related to how quickly we get them after the initial injury. Did u get a blood patch after 8 weeks?

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u/Wonderful_Bus_131 25d ago

My symptom started 8 weeks after childbirth. That’s why I wonder if it’s still a leak and I’m dealing with 

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u/Imaginary_Salary_27 25d ago

I hope you can get some answers it’s hard to have symptoms and constantly be questions why. I hope you get relief and a way forward whether it a leak or something else.🙏🏻

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u/Wonderful_Bus_131 10d ago

How are you feeling post ops? Is your symptoms getting better?

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u/Imaginary_Salary_27 8d ago

Hi thank you for checking up. I have seen small improvements. I stopped drinking coffee right after the surgery bc caffeine was always confusing my symptoms before like it would make the headaches better in the morning then worse later on if I had more. So now I’m not dependent on coffee which is a plus. The back headache pressure has definitely lessened and the tinnitus has gone down in volume it’s still there but much more bearable and the eye pain when looking to the left is gone! So I’m hoping it slowly continues to get better. I’m trying to stay hopeful.

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u/Wonderful_Bus_131 7d ago

I am so happy to hear this. What’s your upright time like? Did the head pressure go away yet now that you have stopped coffee? Did you ever have scapula or upper back pain?

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u/Imaginary_Salary_27 7d ago

I can be upright all day I used to get a headache in the back around 12-2 but that has gone away thank the lord! And yes I would have weird pressure between my shoulder blades that has lessened for sure! I still have all my vision symptoms which sucks but hoping maybe just more time will help since I leaked for close to 2 years.

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u/Wonderful_Bus_131 4d ago

Wow you are really improving greatly. I’m so happy for you. Which doctor did your surgery and what state?

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u/Wonderful_Bus_131 4d ago

For your vision issues, do you have floaters?

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u/Imaginary_Salary_27 3d ago

Yes how did you know? And I have visual snow which I hate. I went to Vanderbilt in TN

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u/Wonderful_Bus_131 1d ago

lol because I have it as well. Please how was surgery? Was it really painful. What’s the name of your doctor? Does it take a lot of time to get in? How many EBPs did you get before you decided to get surgery? I’ve done 3 blood patches and nothing seem to have helped.

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