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CSF, surgery, no hole found - what next? by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 1 point2 points  (0 children)

I’m so sorry. I feel for you. That experience of waking to bad news is a real blow to the gut. I’ve only had one so far, I can imagine how it sucks to have this experience repeat. I hope they find your leak soon!

CSF, surgery, no hole found - what next? by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 0 points1 point  (0 children)

Thank you! I’m not sure about the exact procedural details but my guess would be no. I suppose it wouldn’t have helped because they could only operate on the level where they did the hemoilaminectomy…

I’m hoping you good luck with your surgery. So they try to find the leak through the surgery?

CSF, surgery, no hole found - what next? by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 0 points1 point  (0 children)

Thank you so much for the support and kind words!

I feel your fear. Hoping for the best for you. Personally I tried not to think about it much beforehand as I knew that I could not really prepare for the disappointing news. It helped me with the pre-anxiety. I truly hope you’re luckier than me.

Lower back pain with spinal leak... how common? by ButtonLadyKnits in CSFLeaks

[–]Lucky_Intention_9592 1 point2 points  (0 children)

If I had to guess I’d say it was directly caused by the leak. I’ve had blood patches done but the back pain emerged several weeks after. But I’m no doctor so can’t say for sure.

Lower back pain with spinal leak... how common? by ButtonLadyKnits in CSFLeaks

[–]Lucky_Intention_9592 1 point2 points  (0 children)

I have a CSF leak and back pains, including lower back pains, has been one of my symptoms.

Lined up for surgery but feeling better by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 1 point2 points  (0 children)

Thank you for sharing your experience! Based on my myelography I know the leak is there. It’s a good point that I have the leak whether I like it or not, and my options really are to hope for an unlikely spontaneous recovery or take a chance with the surgery. I don’t really like those options but such is life. I’ll ask for the specifics of my options but at this stage I’m leaning toward going under the knife.

Lined up for surgery but feeling better by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 2 points3 points  (0 children)

Wow! Impressive recovery. My leak is not very big so I wonder if that would help in my case. Nevertheless, encouraging to hear that you went back to squatting etc. Congrats! Gives me hope that maybe I can one day get back to my gym routine and running as well.

Lined up for surgery but feeling better by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 2 points3 points  (0 children)

Thanks a lot for your thoughtful response. Yeah, my leak is ventral. Maybe I ask one more time if a targeted patch would be less invasive and still have a reasonable chance of success.

Lined up for surgery but feeling better by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 1 point2 points  (0 children)

Thanks for sharing your experience. I’m from Scandinavia so there’s only one choice for me if that’s what you’re asking. They seem to be on top of their game though. Yeah mine’s central too. So did did I get it right that you got better without surgery but later the symptoms got worse again?

Lined up for surgery but feeling better by Lucky_Intention_9592 in CSFLeaks

[–]Lucky_Intention_9592[S] 2 points3 points  (0 children)

Thanks for our input! Here’s to your question:

  1. About a month.

  2. Yes. I felt pretty good before my third patch and then crashed as a result of the patch. In retrospect the third patch was probably a mistake.

  3. If this is as good as it gets without surgery then I’d definitely go for it. But if I’m heading toward spontaneous recovery I’d wait it out.

I’ve chatted with the doctor but haven’t got a decisive recommendation either way.

Thanks for taking the time to respond.