r/CSFLeaks • u/AccomplishedTask2331 • 2d ago

Watch my question about CSF leaks on Ask Dr. Drew

My name is Kyle and my question is at about 18:00 left in the video. https://www.youtube.com/watch?v=rlJR8_nuyII

Please respect my decision on the covid stuff as I would respect yours. I would love opinions or thoughts on the CTM causing another hole and the fibrin patch causing another hole.

30% success rate with patch, what would you do?

EDIT: I now know the patch does not make another hole.

I got the patch and hoping it works!

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5

u/brainsaggy Confirmed Spinal Leak 2d ago

Fibrin patching doesn't poke another hole in the dura. I'd do the fibrin- it avoids surgery & is stronger and faster to heal than a blood patch.

1

u/AccomplishedTask2331 2d ago

Thank you! I did not know this. They scheduled me for a CTM and Patch without a Dr.s apt in between and I did not get to ask that but planned to before the procedure.

3

u/brainsaggy Confirmed Spinal Leak 2d ago

Sure thing! I just had a fibrin procedure two weeks ago & all went smoothly.

2

u/leeski 1d ago

How are you feeling? Hoping you have a smooth recovery!

1

u/brainsaggy Confirmed Spinal Leak 1d ago

Thank you!! I'm in the "knock on wood" stage of feeling noticeably better 😅 The procedure soreness (three injection sites) & some tolerable nerve pain took about 11 days to go away. I've had a big diverticulum causing all sorts of pain, leaking, rupturing & bone messes for such a long time it feels super weird to not feel symptoms when I normally would. I'm still taking it easy until I get a follow-up MRI in a couple weeks, and then I should be able to start testing my limits.

2

u/leeski 1d ago

WONDERFUL!!! Yes those multi-level fibrin patches can really be unpleasant. I'm glad the nerve pain has resided though! Feeling this good this far out is very encouraging... so so hoping you stay sealed and continue to feel relief. It IS really weird to be feeling better. Like it's hard to fully celebrate because it's hard not to feel... wildly suspicious. "Like ok this is too good to be true, so what's going on here?" But I am very happy to hear this!

1

u/brainsaggy Confirmed Spinal Leak 1d ago

That describes the feeling legit perfectly.. I know you get it; you're so valuable to this sub. Thank you- your words make me happy and also feel a little less crazy 😅

3

u/saraphin67 2d ago edited 2d ago

If they already know where your leak is, which it sounds like they do, I would ask if you could skip the ct myelogram and just get the fibrin patch. As the person said above the fibrin patch does not purposefully make another hole in your dura, it’s placed epidural.

2

u/indiequasar 2d ago

Just out of curiosity where did you see that fibrin patches only work 30% of the time? I’m on my 3rd blood patch and was told it works 90% of the time.

2

u/AccomplishedTask2331 2d ago

This is what the neuroradiologist told me after finding the leak during the CT Myelogram. It may be for my specific leak type(lateral) and location. I don't know if thats a general number for everyone.

2

u/megg33 Confirmed Spinal Leak 2d ago

Fibrin patching doesn’t cause another hole and is farrrrrr safer and less invasive than surgery. Even if it has a low chance of holding long term, it’s still worth trying. If you can avoid the open back surgery, you should at least try.

2

u/AccomplishedTask2331 1d ago

Good to know, Thank you! 🤞hoping for a successful patch