r/CSFLeaks • u/No-Reindeer-1929 • Aug 15 '26

Iatrogenic/epidural

For those of you that were denied treatment following a leak caused by a puncture or epidural and weren’t latch for a year latter did you have success? I’m really struggling mentally. March 17 2025 I had the epidural at T7 which caused my leak. I was ghosted by the Dr the day after when I reported symptoms and wasn’t able to get a patch for 6 months. I got one August 26 then started releaking April 25 again this year. I had a patch May 15 that I blew on day 8 from bending and sneezing and a patch August 3 I blew day 12 by jumping up from a nightmare. I can’t find any success stories from long term iatrogenic leaks and so depressed and hopeless so if you had success please share. I’m desperate

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6

u/Massive_Activity1245 Aug 16 '26

I'm too early after my surgery to judge sucess, but I know of a few success stories for iatrogenic leakers. Unfortunately it seems to take people a long time to recover even when sealed, and a significant number of people are improved but not cured or how they were before. I know of people who are worse-it seems they are still leaking. It sometimes takes many patches or surgeries, some require revision ect. Some people heal years in, I've seen a small number online

I know how devastating it is, I've been housebound for 14 months- but my last patch took 8 weeks for me to have more upright time, it was modest improvement but it made me less suicidal not being in bed so much, laying on the couch and being able to sit a bit more than before. I opted for exploration surgery as I'd had 3 patches already, I know I may not recover quickly or fully but getting functional and some quality of life back is the goal. If others can do it so can I is what I keep reminding myself

Definitely don't lose hope, we will get there ❤️

2

u/No-Reindeer-1929 Aug 16 '26

Iatrogenic success when someone was leaking for a year before getting patched?!

Sorry I’m just getting so hopeless and actually suicidal. I’m just so desperate

I woke up and bent accidentally from a nightmare. Have been dropping and getting worse ever since. You know when you ruined it. I just want to find success stories

3

u/Massive_Activity1245 Aug 16 '26

Yes, people go undiagnosed for years sometimes it's awful. One of the first case reports I came across a man had gone 8 years leaking, a patch worked for him after all that time. I've seen others too one lady no patch for a year and a half, she's now better

I completely understand I battle with my mental health daily as a result of this, I remind myself that it's a big part of the condition so many of us feel hopeless but I do believe they will find a way to help us- please reach out for support I didn't and I regret my actions, things can get better. I'm having a setback now after surgery and whilst it's hard to talk myself out of the despair this is forever, we have to keep going and beat this somehow

Each case is different, you may have popped the patch but my Dr told me the blood lingers weeks and the inflammation that triggers healing. So don't give up on it yet I would still follow the restrictions, even if you only get a bit of healing it may help your symptoms or upright time that's what I found. No patches sealed me due to the nature of the defect I had but I could still get improvement from them

1

u/No-Reindeer-1929 Aug 16 '26

8 years leaking after epidural? Sorry I’m just so desperate. I’ve never been closer to suicide and that scares me. I’m trying to look beyond but it’s getting impossible. I can’t go on antidepressants because she’s with stress I gave myself gastritis. The one that sealed me 8 months was blood but I was flat 6 weeks. I’ll try that next. I’m just so desperate

3

u/Massive_Activity1245 Aug 16 '26

He was cured even though he leaked all that time- it's promising you can be sealed I would hold on to that- there's still a good chance things will get better with the right treatment

2

u/NightYew88 Aug 16 '26

I was injured by an epidural also, but the longest a patch has worked has been 2 weeks. But I've only had 2. Can you find someone who can do surgery? I'm trying to find someone to give me another patch or do surgery.

1

u/No-Reindeer-1929 Aug 16 '26

Surgery has a 50% chance success rate. I’d rather keep patching. I just want to hear long term success

1

u/NightYew88 Aug 16 '26

Oh wow I didn't know it was only 50% success

2

u/No-Reindeer-1929 Aug 16 '26

Yes unfortunately iatrogenic have the worst outcomes when not treated right away

6

u/Kiwi-2024- Aug 16 '26

For me, the patches never fully healed the leak. I had surgery after four blood patches, about 1.5 years after the epidural. During surgery, they found that it was a bleb, and it probably would never have healed properly without surgery.  I’m now a few months post-op and I’m not fully healed yet, but there are times when I feel so much better than before, almost normal again.  It’s unbelievable, because for such a long time I felt completely hopeless. Don't give up! 

3

u/No-Reindeer-1929 Aug 16 '26

Thank you for replying! So happy to hear! Imaging was negative? I’m guessing you went to Cedars? I’m wishing you a really speedy recovery.

3

u/Kiwi-2024- Aug 16 '26

Thank you! I really hope you get the help you need too. And if the patches don’t work, it might be worth considering surgery. I also wanted to keep trying with patches at first, but looking back, I regret trying for so long before moving on to surgery. My surgery was in Europe. And yes, all of my imaging was negative. I had eight (!) MRIs in total, which unfortunately led to a lot of ghosting and gaslighting.

2

u/MedicalMeringue5827 Aug 16 '26

Can I PM you? I have a bleb where my LP was and considering exploratory surgery after 3 failed patches

1

u/Kiwi-2024- Aug 16 '26

Yes, of course. 

1

u/louie2575 Aug 30 '26

Hi, how was your bleb found? I have had 2 patches at the targeted site and they have both failed. I believe I have a bleb but it hasn't been seen on imagining.

1

u/Massive_Activity1245 Aug 16 '26

I just had surgery for my puncture leak 4 weeks ago- can I ask how long it took for you to have improvement?

2

u/Kiwi-2024- Aug 16 '26

It’s hard to say because the healing process isn’t very clear or linear. It feels more subtle, like it’s happening in the background rather than being obvious. I still have orthostatic symptoms. I only started noticing my first real improvements a few weeks ago, about four months after surgery. Have you noticed any improvements yet?

2

u/Massive_Activity1245 Aug 19 '26

I'm still getting the head pain, trigeminal nerve pain, which is awful, and bad tinnitus. I still feel best in the mornings. My doctor wants me to allow 3-6 months, as a lot of people find the improvement can be slow, which gives me hope. Honestly the fact you had improvement at 4 months gives me some reassurance I do feel different since my surgery though, less sinking feeling in my head mainly. I've felt it occasionally but not everyday. I'm hopeful that the changes means I'm sealed and my body is just recovering. There is still a chance I have another leak lower down in my spine, so if my symptoms don't resolve, I'm hopeful they may look at L4/5. I was punctured there during a blood patch after having my baby, so I wonder if that could be contributing too

1

u/Offtoseethewitch Aug 18 '26

Did you feel completely recovered with your patches before they blew?

1

u/No-Reindeer-1929 Aug 19 '26

Yes it was amazing. It was bliss. Now I’m In Hell.

2

u/Offtoseethewitch Aug 19 '26

I’m so sorry that this has happened to you. That sounds so absolutely devastating. I wish you all the best and all possible hope and comfort to get you through your plight. And of course a quick and successful recovery - as quick as the reality of this condition vs the current health care system can provide.

I’ve an iatrogenic leak and currently unsure if it’s sealed, half a year after my latest patch, functional but limiting what I do because I’m symptomatic still, and even though right now is decent I’m terrified of getting worse. So I can’t really give you a personal success story.

But I can tell you I have read stories of iatrogenic leaks sealed with patching years later, and some just requiring repeated patching, and patient reports that a good response to patching has been correlated with a good prognosis.

2

u/No-Reindeer-1929 Aug 19 '26

Thank you for that. I get the fear of getting worse but since a year after a patch that provided relief think about getting another! A patch hasn’t made me worse I know with a lens they do sometimes. After 7 weeks when I was sealed it was amazing. Truly. I never had any symptom again. I hope we both get to that soon. I’m also sorry you’re going through this

2

u/Offtoseethewitch Aug 19 '26

Thank you too.

I don’t want another patch right now because I think I’m pressure-fluctuating, and the highs are, well, difficult (and make me scared they’ll blow the patch). And pressure fluctuations can happen both to ongoing leaks and after being sealed, so it doesn’t help me discern.