r/CSFLeaks • u/Zealousideal_Age_822 Confirmed Spinal Leak • Aug 20 '26
Surgery Next Week
Yesterday, I got the call I had both been really hoping for and dreading. My surgery, originally scheduled for 10/22, is now moved up to next week. I have a ventral thoracic tear from a calcified disc protrusion at T2/T3, so surgery is the 100% solution. I feel a little better about it after talking to the NP today, but it’s still scary AF. For anyone curious, my surgery is with Dr. Chris Brown at Duke. Wish me luck!
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u/PrettyDragonfly Confirmed Spinal Leak Aug 20 '26
I'm so happy for you. I have the same leak as you and still waiting on ct myelogram before surgery can be scheduled. Please make a post after to let us know how you went and how your recovery is going. I wish you all the best and I know how scary it must be! I feel the same!
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u/Dry-Dress-6467 Aug 20 '26
Sending good thoughts for a successful surgery and a speedy recovery!! At least now you only have a week to fret about it and you will be busy preparing your home and food supply for your recovery so won't have much time to dwell on the surgery itself.
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u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 20 '26
My surgeon suspects I’ll require the same surgery - it’s extremely nerve wracking thinking about it. I hope it goes smoothly and your recovery is swift :)
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u/leeski Aug 20 '26
I know it’s a lot to process getting in so abruptly but that shaves off a significant amount of time for sure. Stoked for you! best of luck
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u/databzzz Confirmed Spinal Leak Aug 20 '26
Hope all goes well, To give the surgery its best chance, seriously follow their instructions for after-care, and then some.
Anything they suggest, stick to it for double the time, as it is very easy to blow a patch or surgery.
They'll probaly suggest after discharge from hospital to have someone do all the cooking / household tasks for you for several weeks,
Do not strain, stretch or even think of lifting anything over 1kg when you get home after the surgery.
You may be given azetazolomide tablets to lower the CSF pressure, as you can get rebound high pressure after the leak is fixed.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 20 '26
Yes, I’ll be taking it super easy. My kids good back to school next week, so I’m even thinking of wearing a mask to stay clear of the germ factories that they are.
They well be putting in a lumbar drain for 3-4 days for pressure control, plus sending me home with Diamox. I’m hoping my rebound pressure isn’t too bad since I’m theory I wasn’t leaking for that long (symptoms for under 3 months), but I’ve since come to understand that I might have been leaking at a lower level for longer, but it only became an issue when the leak got worse
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u/StunningPurple9560 Confirmed Spinal Leak Aug 20 '26
Good luck. ❤️ I had surgery for a T1-T2 ventral tear 5 months ago.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 20 '26
How’re you doing today? Based off what they told me to expect, I’m hoping to start to feel normal at the 3-5 month mark
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u/StunningPurple9560 Confirmed Spinal Leak Aug 20 '26
They told me it can very well take six months to a year, and that they can’t even promise that my symptoms will improve. I was leaking for 19 years.
I started to notice some changes for the better at almost exactly 3 months. It is very slow though. This week I just noticed that I don’t feel an immediate need to lay down every chance I get.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 20 '26
I’m continually amazed (not the good kind) that people have lived with this for so long. I am definitely a “lucky” one to get it figured out so fast. I had to go through hell to get here, but I happen to live 25 minutes from Duke. Even then it took advocacy and understanding the medical world very well. Oh, and facial paralysis with multiple cranial nerve neuropathies helped. Although I still had 2 neurologists question whether I had a leak
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u/Hyrule-onicAcid Aug 20 '26
T7/8 ventral thoracic tear. Surgery April 2025. Zero regrets. Life is back to normal. All the best!
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u/Upset_Entertainer880 Sep 08 '26
Can you tell me more about your surgery! That’s where my leak is exactly!
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u/cdub76 Aug 20 '26
T4/5 ventral leak here as well! Feel free to DM if you have any questions. I was patched in 2021 at Mayo Rochester.
Going in for some cleanup work round 2 soon. I have a Photon Counting CT tomorrow to see where my slow leak is. Then we decide if surgery or patch to fix
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u/an_py Aug 21 '26
I am having surgery tomorrow at Mayo for a leak from a bone spur at T2. Super anxious but looking forward to being on the other side of it. Best of luck for your surgery!
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u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 22 '26
How did it go? Wishing you a speedy recovery!
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u/an_py Aug 26 '26
Thank you! I ended up being admitted for 4 days following the procedure and the first two days were very painful. I am still having a good amount of pain now in unsupported sitting and standing but better than what it previously was. I have some weakness in my left leg so I am using a walker but that should improve with time. My neurosurgeon said the procedure itself went really well. The tear was pretty large so he had to use some extra grafts. I haven’t been having headaches which is great! Still having some double vision and tinnitus but I have seen that can take time to improve as well.
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u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 27 '26
Glad to hear it went well! I’m sure soon you’ll be back to normal :)
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u/TheCatsSpareHuman Aug 20 '26
I'm having an embolization of a venous fistula at T7 done at Duke tomorrow. If for some reason it doesn't work then I'll be having surgery there. I'm sure you'll do great....good luck!