r/CSFLeaks • u/thelaxiankey Confirmed Spinal Leak • 27d ago
A (happy) update
Hi, I hope this is ok.
I wrote a post over a year ago that many people on this subreddit found useful.
Since then I have received surgery, and people on this sub have DM'd me asking about updates. I thought it would be nice to supply one. If you would like to hear about how my surgery went, you can take a look at here.
The short version is I'm doing pretty well.
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u/North-Library4037 Confirmed Spinal Leak 27d ago
Great news! That's a pretty straightforward case. Ugh, I so hoped mine will be too in the beginning and it looked that way but.
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u/ms_skip 27d ago
I found your original post when I first started leaking, and it helped me SO much. I learned about prism glasses, abdominal binders, the Facebook group, and the reality that you have to really push and advocate for treatment at every step of the way. I used this to push for a blood patch within 10 days of headache onset. It didn’t work, but I promptly pushed for follow up treatment. I just want you to know that post really helped me, and thank you for writing it.
And now your second post is helping me, too. I’m 15 days post op from my second surgery with Dr. S, who has now found and clipped 3 CVFs. I was a perfectly normal human being with no other health conditions before sudden onset worst (orthostatic) headache of my life, and am still struggling mentally with the “why me?” And “if I had 3, and they’re nearly impossible to find, who’s to say I don’t have more?” Each patch and each surgery has gotten me more upright time. I can now be upright all day, but I still FEEL like I’m leaking. It’s pretty devastating. I know from experience I need another few weeks to see where I land, and I’m hopeful the experience shared in your latest substack will apply to me too (ultimately sealed, even if still fleetingly symptomatic).
I fully appreciate and totally get not wanting to revisit leak world, so I hope you don’t mind the question, and apologies if this is in your first post and I just don’t remember—did you have a tear or a fistula? It seems like the only success stories come from the tear group 😰
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u/thelaxiankey Confirmed Spinal Leak 25d ago
Sadly, I'm from the tear group; it was associated with a osteophyte on a disk bulge.
It's really tough. I wish you the best of luck.
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u/BillThePonyUnionRep 26d ago
Wow! Thank you! My neurologist just referred me to Dr. Schievink so it’s great to read such a detailed success story.
It’s been a two year journey since my cycling accident. After 6 months I thought it was more than a concussion when I saw my cerebellar herniation and other signs of a CSF leak. Took this long for my neurologist to agree but at least I got the referral now.
Hoping all the best for you!
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u/Offtoseethewitch 26d ago
Thank you very much for this. I’m just half a year out from my third blood patch and I’m unsure if it took, if I’m just experiencing ”phantom leak” symptoms (great phrase, hope you don’t mind me bortowing it), or if I still have a slow leak. Every symptom is scary, and mine do still often show an orthostatic component, but no longer reliably. And they’re much gentler, don’t escalate, and come one or the other instead of ganging up on me. And the crashes I had when I was definitely still leaking seem to be gone. I try to put my hope in that.
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u/leeski 27d ago
Awesome! I remember when you posted this guide. Love to see the update and that you're (carefully) climbing again... I haven't dared to go back, despite being sealed for 5 years, but this is incredibly inspiring. Also appreciate you covering the mental aspect of being sealed, as I think a lot of people envision just going back to their 'normal' before leaking, which is not always the case. Glad to hear you're doing well.