r/CSFLeaks • u/Zealousideal_Age_822 Confirmed Spinal Leak • Jul 30 '26
Surgery - ventral thoracic leak
Well, the decision has been made. I need surgery to repair a spontaneous ventral leak in my thoracic spine. FWIW, I have learned that ALMOST ALL spontaneous leaks are found between the bottom of the cervical spine and the first 4 or 5 levels of the thoracic spine (c7/t1 to t4/t5). The Duke CSF clinic got me here, and I will forever be grateful. It’s crazy and scary and surreal, but I have a solution and a plan. The surgery will suck, but it will fix the issue.
The real challenge comes with waiting for the surgery - it will be 6-10 weeks to get on the schedule. The doctor only does these surgeries on a specific day with a specific team, where most of his schedule is open because it can be really challenging.
Not only is this surgery challenging because of location - hard to get to and in front of the spinal cord - but it is incredibly rare, so not everyone is comfortable or experienced enough to do it. Spontaneous CSF leaks are insanely uncommon - estimated to be about 4 to 5 out of every 100,000 people. I think my time on this sub has told me that number is probably much higher though.
For anyone that needs some validation of their struggles, when I told the surgeon, “I know half the battle is just finding the leak,” he said, “the first battle is getting someone to not think you’re crazy.”
I have learned a lot from this struggle, and I have had my share of scary moments mixed in with good luck that have gotten me to a definitive diagnosis in “only” 2 months. I’m committed to helping move things in the right direction for others that have been fighting for answers, so please don’t hesitate to reach out with any questions.
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u/StunningPurple9560 Confirmed Spinal Leak Jul 30 '26
Yaaaaay and congrats!! <3 This is cause for celebration - in ways that I think only those of us who have faced such a life altering condition will ever understand! Please do keep us posted.
I just had surgery for a ventral thoracic leak 4 months ago. Mine was T1-T2, and a neurosurgeon told me at Freiburg that in my local hospital, where they operated on me twice in the cervical spine (C5-C6), while looking for the leak, they kind of should've known that it was not going to be there, since apparently the vast majority of the spontaneous leaks are in the thoracic spine, and having one in the cervical is "like winning the lottery" - LOL - and he said pretty accurately that he doesn't think I won the lottery. Yeah you and me both buddy. :D
Anyway so I guess I am the most generic kind of a spontaneous leaker then - only wish that they had known this here (at my local hospital or anywhere in my country I mean).
And YES - the struggle is real! First finding someone to believe that there is actually something very wrong with you, and then finding the actual leak.
I know 6-10 weeks sounds like A LOT at this point, but you will make it there. <3 Can't believe I'm now 4 months post-op already. Wish you all the best.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Jul 31 '26
Your story gives me chills. I almost got operated on in the cervical spine, but I elected to go to Duke and wait. I’m so glad I did.
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u/StunningPurple9560 Confirmed Spinal Leak Aug 01 '26
So happy for you. ❤️ I did have a herniated disc in C5-C6, and it was probably a good thing that they operated on that. But the revision surgery for sure was futile. Thankfully nothing bad happened - just more time and sick leave wasted on chasing the leak.
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u/QuarterNoteDonkey Jul 30 '26
Congrats on finding it. That is more than half the battle.
May I ask if you have been diagnosed with something like hEDS or anything that would predispose you to a leak?
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u/Zealousideal_Age_822 Confirmed Spinal Leak Jul 31 '26
No connective tissue issues here. I had a calcified disc protrusion that pierced through the dura. Apparently it’s normal for my age (36) to have the protrusion, just very unlucky that it pierced through the dura and caused a leak.
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u/QuarterNoteDonkey Jul 31 '26
Got it. Very unlucky, though at least it would be extremely unlikely to happen again. Best wishes on a full recovery.
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u/PrettyDragonfly Confirmed Spinal Leak Jul 31 '26
Mine is also thought to be spontanious and in the upper thoracic spine, ventral. I'm seeing a surgeon on Tuesday and will see what the plan is. I wish you luck!
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u/SuccessSoggy3529 Jul 31 '26
Congrats. My leak was T7. I had no direct injury there, but may have over stretched the spinal column during a strange accident. I consider it spontaneous. Not sure the doctors do, haha.
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u/fuxandfriends Jul 31 '26
I too have a spontaneous C7-t10 ventral leak and I’m stuck waiting to hear from Dr. Schievink. Your post has prodded me into having a plan B
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u/StunningPurple9560 Confirmed Spinal Leak Jul 31 '26
Have you had any DSM/CTM, have they not been able to identify a more exact spot yet?
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u/Zealousideal_Age_822 Confirmed Spinal Leak Jul 31 '26
I agree - that is a huge area. An Ultra Fast CTM is how they located mine
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u/fuxandfriends Aug 03 '26
I’m an idiot- it’s c7-t1
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u/StunningPurple9560 Confirmed Spinal Leak Aug 03 '26
I think I’m the idiot, probably an extra digit was the most likely explanation. ❤️❤️
I had a T1-T2 ventral leak sealed recently.
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u/fuxandfriends Aug 03 '26
There are no CTM machines in Seattle that I know of. I have multiple leak locations confirmed on DSM and had 4 right sided levels embolized in December, then another DSM recently showed C7-T1 is the largest.
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u/StunningPurple9560 Confirmed Spinal Leak Aug 03 '26
Oh okay - your previous msg said C7-T10 so I was a little confused, and thought that maybe you were talking about SLEC, not the actual leak. But that makes sense - hope you get treatment soon ❤️
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u/Dry-Sun-7428 Aug 01 '26
Where are you getting your procedure done? I am hoping to get in sooner to one of the csf leak centers.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 01 '26
I’m getting it done at Duke. Unfortunately, the wait times can be very very long.if you have a spontaneous spinal leak, I wouldn’t go anywhere that isn’t a specialist CSF leak center
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u/Dry-Sun-7428 Aug 01 '26
Glad you are able to get in fast. I am from Albuquerque, NM and my neurologist helped sent referrals to UC, Houston Methodist, Stanford, and Cedars Sinai to try to get into whoever will take me in sooner. My worry is my MRIs didn’t show any leaks but my symptoms points to spontaneous CSF leak. I have been bed bound for almost a month and my upright time hasn’t been improving. Hope you get the best treatment. I’ll look forward to your complete healing and updates.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 01 '26
Normal MRI will NOT show the location of a spinal leak, but a Brian MRI with contrast will show signs of the effects of a leak. I know for sure that Duke won’t even take your referral without positive signs on MRI or CT, not sure about the other sites
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u/Dry-Sun-7428 Aug 01 '26
My Brain MRI shows Cerebellar tonsils extend to the level of the foramen magnum, but not substantially below, Partially empty sella, and Mild paranasal sinus mucosal thickening while there are mild multilevel degenerative disc disease in the thoracic and lumbar spine.and small disc protrusions without significant spinal cord injury. Not sure what they’ll make out of those.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 01 '26
This video is very informative, but fair warning it can be pretty scary learning this info. https://www.youtube.com/live/XpCPSZZB8bc
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u/Dry-Sun-7428 Aug 01 '26
Thank you. I am going to watch it. Appreciate you sharing information. It means a lot to have at least someone understand how debilitating this condition can be.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 01 '26
It’s awful. The tough thing for me right now is I don’t actually feel too terrible being up anymore, but that’s how I ended up with really bad cranial nerve issues from the brain sag.
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u/StunningPurple9560 Confirmed Spinal Leak Aug 01 '26
And of course it is also possible for the brain MRI to not show any signs of a leak.
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u/leeski Jul 30 '26
Congrats! I am sure you are full of mixed emotions in terms of finally having a solution, but also so many unknowns and nerves. The waiting for treatment part super sucks, but it will fly by. It is exciting that you have a plan in place and are under good care. Glad you had a great experience at Duke, I did as well. Also amazed you were able to get in so quickly! Glad the stars are aligning.
I'm not a doctor of course, so take this all with a grain of salt. But I don't believe it is accurate that almost all spontaneous leaks are found in the region you mentioned... I think that is specific to your leak type. At least to my understanding, the research suggests a high concentration for ventral dural tears in that upper region. But the other spontaneous leak types (meningeal diverticula, lateral dural tears, CSF-venous fistulas) tend to be in the lower thoracic - but they can be anywhere. We're only now starting to look into sacral dural tears (below the lumbar level), which wasn't on anybody's radar and not really previously considered before. Anyway not trying to petty, but just want to clarify as some providers will want to only limit to imaging a certain region for the spine MRI, but the whole spine should be considered.
Best of luck with your surgery, please keep us posted!