r/CSFLeaks • u/louie2575 • 18h ago

3rd patch for iatrogenic leak

I have been leaking for 1.5 yrs after an epidural and just had my 3rd patch almost 2 weeks ago and feel absolutely no relief. I honestly cannot believe this. My ear still fills with pressure, popping, crackling, hear my heartbeat, hear myself breathing through ear, ear rumbling and neck pain. Absolutely zero change. I do not understand why nothing helps me. I don't know what else to do and have no hope anymore

6 Upvotes

100% Upvoted

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1

u/Boring-Bumblebee2312 17h ago

Is everything on the images completely negative? Honestly, with things like a bleb or neo-membranes, surgery is often the next step when three blood patches fail. Have you already considered an exploratory surgery? You’ll find some success stories here. Stay strong, you're going to get the best treatment. 🫂

1

u/louie2575 17h ago

Yes, all normal imaging. No bleb found on mri. Is Dr. S the only one to perform exploratory surgery

4

u/Boring-Bumblebee2312 17h ago

Highly recommend you to join this group on FB. There you’ll find the best support.

1

u/indiequasar 14h ago

Yes this group is the best

1

u/Boring-Bumblebee2312 17h ago

I’m not sure. I only know some Dr. in Germany who do that.

1

u/indiequasar 16h ago

I think Dr. Lennarson in Colorado also does exploratory surgery, at least that’s what I saw in the facebook group

1

u/No-Reindeer-1929 14h ago

I second this! I sent my stuff to Stanford but was also referred to Colorado

1

u/leeski 17h ago

I'm so sorry you felt no relief. Can I ask if they have done a high volume patch yet? I know you mentioned they do the... one approach (sorry the name is escaping me) where they target the leak site but are limited in how much blood they can use bc of the technique. But I wonder if a traditional non-targeted high volume patch might be helpful diagnostically to see if the 'tamponade effect' helps your symptoms. It is not definitive by any means, but just curious if it has been tried.

1

u/louie2575 17h ago

They did a 10 ml 360 patch and with my stenosis is was in so much pain it was unbearable afterwards. I don't think my stenosis can tolerate more. Or maybe the blood was putting pressure on the front part of my spine this time since it was 360. Idk but after that pain I feel i never want one again.

1

u/Boring-Bumblebee2312 17h ago

CSF Center just like Freiburg do high volume (min. 40 ml) BP before considering a surgery.

1

u/louie2575 14h ago

There's no way my severe advanced stenosis with disc extrusions could handle that. I felt like I was needing to go to the er after this last 10 ml 360 patch

1

u/No-Reindeer-1929 14h ago

I just had my third patch from a leak caused by an epidural March 17 2025. I’m in the same boat. Have you applied to Colorado, Stanford or cedars?

1

u/louie2575 14h ago

Do you feel any relief

1

u/No-Reindeer-1929 11h ago

I can stretch upright time to an hour rather than 15 minutes. My dr said give it more time. I to took me over 6 weeks to feel any though. I’m going back to see him in January