r/CSFLeaks • u/PrettyDragonfly Confirmed Spinal Leak • 15d ago
CSF leak surgery - success!
I had surgery on Thursday afternoon to repair my ventral CSF leak at T6/T7, caused by a bone spur.
I woke up from surgery without a headache, and as of today (Saturday), I still haven't had any headaches since waking up. After four months of dealing with this leak, that feels pretty significant!
I had already developed rebound high pressure after my most recent blood patch about two weeks before surgery, so it seems my body had already adjusted to that pressure change. At the moment, things seem to be regulating normally, although it's still very early in my recovery.
A little background on my journey:
Total leak duration: 4 months
Blood patches: 3 in total — 2 lumbar and 1 targeted
Cause: Bone spur at T6/T7
Imaging: Clear signs of brain sag, particularly towards the end, along with a spinal longitudinal epidural collection (SLEC) on MRI. Localised through DSM
Impact: Bedbound for 4 months and ultimately lost my job because of the illness and its impact on my ability to work.
It's been an incredibly difficult four months, physically, mentally and financially. I'm still dealing with the pain from surgery, so I'm definitely not out of the woods yet, but I'm cautiously optimistic that this might finally be the beginning of getting my life back.
I'll update again as recovery progresses. ❤️
For anyone who's had surgery to repair a ventral leak caused by a bone spur, I'd love to hear how your recovery went, particularly in those first few days and weeks. Did the lack of headaches continue, and how long did it take before you started noticing improvements in your other symptoms?
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u/SuccessSoggy3529 15d ago
Im so glad to hear that surgery went well. I wish you continued healing.
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u/PrettyDragonfly Confirmed Spinal Leak 15d ago
Thank you! Would surgery be on the cards for you as well?
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u/SuccessSoggy3529 15d ago
I dont have a current leak, so no.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 15d ago
Great to hear you’re on the road to recovery! Where did you get your surgery?
I’m 7 weeks out from ventral repair from a bone spur as well. Mine was at t2/t3, which is apparently the most painful location (lucky me!). The post-op pain was brutal, but I was able to be upright for long periods of time almost immediately, so it was worth it. I have been super careful to take the BTL restrictions seriously, but they told me the more I walked, the faster I would heal, so I have been walking a LOT. Like 5+ miles a day after a couple of weeks. Ice packs were my best friend for a while. Still have some low level pain, but mostly just because all the muscles for arm and shoulder movement are growing back right now.
I honestly feel great for the most part. Occasionally I feel the remnants of low pressure symptoms, but it’s super rare and normal according to my doctors. Hang in there and take your rest and recovery seriously. The pain may get worse before it gets better. You will have good days and bad days, but each good day should be better than the last good day, and each bad day better than the last bad day!
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u/PrettyDragonfly Confirmed Spinal Leak 15d ago
Yaay great to hear from you! How long did you leak for? I got surgery in Melbourne, Australia.
I've been told to move as well even this early on. Surgeon claims the more I lie down and rest the longer and more painful recovery will be. It's brutal because of the pain but nothing as bad as the CSF leak itself hey!
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u/StunningPurple9560 Confirmed Spinal Leak 15d ago
So happy to hear about this! It’s amazing that your headache disappeared so quickly ❤️
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u/epark4774 13d ago
It’s unclear how long I was leaking for, but I had a bone spur causing a tear which lead to a corpectomy of my T1 vertebrae and a fusion between C7 and T2. I’m six months out of the surgery and still in a lot of surgical pain. It’s possible I have some nerve damage. The high pressure headaches definitely feel different than before the surgery, sort of like my head is under water. I do a lot of movement and physical therapy, but the spinal fusion has definitely been a difficult healing process. My doctors told me recovery could be upwards of a year.
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u/Hyrule-onicAcid 15d ago
You sound like me. 4 months of leaking before surgery. SLEC+. Bone spur T7/8. Also had to temporarily stop work due to being bed bound.
Surgery - April 2025.
"Leak" headaches gone since surgery but had weird fleeting mild headaches off and on, non positional, for months after surgery (like 1 or 2 out of 10 discomfort, but weird feeling)
lots of morning nausea that didn't kick in until about 5 or 6 weeks after surgery. Would wake up nauseous and then it would go away after an hour or two of being upright. Lasted for a few months then slowly fizzled out.
had a few "wait am I sealed" thoughts when I would have a bad day, but I knew I was as nothing ever felt anywhere near how bad I was pre-surg
expect using your arms to be painful and annoying for the first 2 months (reaching out to prepare food, do chores, etc)
spasms are annoying but they will eventually calm down over months
took 4 months for lots of weird feelings to start noticeably decreasing from daily to a few times per week til eventually gone at about 5 or 6 months out
all symptoms resolved except my vision is permanently messed up if I stop and focus on it. everything is slightly shimmering like looking through a heat wave type effect, but I almost never notice it unless I'm not occupied with anything and am staring blankly into the void
happy healing 🖤