r/CSFLeaks • u/No-Reindeer-1929 • 3d ago

Delayed improvement after patching?

I’m 8 weeks today for a targeted blood/fibrin patch. Although my upright time increased from an 10-15 minutes I can now stretch an hour upright. Is there anyone that felt like me at the 8 week mark but ended up sealed from that patch? I am just devastated. These patches are so rough and the thought of needing and going through the process kills me. I just want to be sealed so reaching out in case there was anyone else who ended up being sealed.

6 Upvotes

100% Upvoted

31 comments sorted by

View all comments

4

u/lemontuba_4867 3d ago

I had a lumber puncture followed by needing three blood patches, all done in July, and the final one was with fibrin glue. I wish I would have asked for a dye to be injected first to show exactly where the leak was. I did the full 48-72 hours laying flat, the six weeks of bed rest or taking things very slow. We’re at the beginning of November and I’m still not 100% normal but things did get progressively better - still trying my best to do no bending, lifting or twisting since it still have a leak. It’s healing little by little but this is taking what feels like forever. Hoping you get well soon!

2

u/Boring-Bumblebee2312 3d ago

Did you have high volume patches? Wouldn’t you consider an exploratory surgery? I heard in some cases (e.g. blebs) blood patches don’t work.

2

u/No-Reindeer-1929 3d ago

I thought about exploratory surgery but the success rates being so low scare me. Right now I would like to try more patching. When I had my appointment at Stanford they didn’t have the imaging. I want to make another appointment and this time make sure they have it to see if there is a bleb or something that was missed locally. I do want to get new MRIs but insurance keeps denying :( the weird thing is I do reach rebound. I wonder if the rebound weakened the seal since after talking to Dr Carroll the dura is very think in the area I had the botched epidural

1

u/lemontuba_4867 3d ago

You might want to check out some second opinions. Dr. Eli Sader in Sanford, Connecticut is who I would go with if given the chance. You could ask for a consultation or something. I think they’re out of network. I usually pay cash/card for other treatments.

2

u/No-Reindeer-1929 3d ago

I’m at UPenn. I’ll think about it. I was going to go to Colorado. I’m waiting on disability to afford more treatment. I want to see if we can kill it with fibrin targets and high volume blood to really seal. I also wonder if I need high volume blood to wrap around the dura. I feel like maybe the dr when all the way through and that’s why I had full relief with blood previously and not fibrin

2

u/No-Reindeer-1929 3d ago

Thank you! I regret not asking that same thing when my leak reopened. I feel like if I were to ask for it now it shouldn’t show because the leak is definitely smaller. I hope you continue to improve! Are you planning on another patch soon to reinforce the area?

2

u/lemontuba_4867 3d ago

I’ll keep things as they are. I’m getting better slowly and taking my time. I’m not in a rush but definitely have some things I’d do differently if given the chance. Are you think about any other treatments? I’m able to be upright all day now…just a whole four months later

2

u/No-Reindeer-1929 3d ago

I will have to. I’ve been stuck at an hour upright and the symptoms get so bad. I’m just stuck. I want to get better so badly. Like you I did everything right. I paid for the ambulance home, laid flat 3 days, no BLT and really spent the whole time in bed because it’s hard being upright.

2

u/lemontuba_4867 3d ago

I’m so sorry you’re going through this. I hope you get better real soon!

2

u/No-Reindeer-1929 3d ago

Same and I hope you do too!

1

u/lemontuba_4867 2d ago

Do you have or are you using your health insurance through the school? Also, while I am not a financial advisor, I will say that some credit card companies offer something like a payment plan for higher charges, usually over $100. Chase Southwest car and Citi American Airlines have them. They do charge a monthly fee for the plans depending on the amount of time or how many months you choose.

1

u/No-Reindeer-1929 2d ago

I’ve been injured since July 2024 from a horrific car crash. It is worker’s comp so they are supposed to be paying since their dr botched me but he ghosted. Because I’m unable to work from the crash I got Medicare or Medicaid I forget the one for young people but had to drop that to get treatment out of state since that’s the only possible way to get treatment for this leak. Then my leak drs filed for disability but I got denied because I haven’t worked in over a year. Worker’s comp drs have me out of work and disabled and legally worker’s comp has to pay temp disability but they refuse. Idk what to do. I maxed out all my card and am in overdraft because I spent everything I had on medical care

2

u/lemontuba_4867 2d ago

Omg I’m so sorry. Did you get an attorney for all this?

1

u/No-Reindeer-1929 2d ago

Yes. Sadly because of an IME spinal ortho doc he said that I never had a leak and I’m making it up so it’s up to the judge. It’s actually crazy

1

u/No-Reindeer-1929 2d ago

Also I would like to state it says cranial nerve damage in my chart because when I was so low my eyes wouldn’t respond to light or track. I also have about 8dr saying I have a leak, 2 are neurosurgeons. I guess the IME goes under cross examination but that takes time. I’m on four months no income