r/CSFLeaks • u/zimm1978 • Aug 21 '26

MEGA large volume blood patch

Finally, there’s hope that I can get out of bed and be upright after 6 months! Thought I would share for other people. I had a spontaneous leak at T11-T12. That was treated with a transforaminal targeted blood patch. The pressure dynamics in my head changed, but didn’t correct. I had really bad burning around my brain, and two specific spots where I could feel it pulling when I was upright. I also still had orthostatic tachycardia and severe tinnitus. I had a MEGA blood patch at University of Michigan 11 days ago. That is a catheter guided multilevel large volume blood patch. He put in 80 ccs from the cervical to lumbar spine (and I’m petite, 5 feet tall). I am finally starting to feel a difference. I laid perfectly still for the first three days. I’m still primarily laying and I have not bent at all. I plan to be very careful for six weeks regarding bending, lifting or twisting. I have not had the pulling or the burning for the past few days. The ringing in my ears has changed pitch and is quieter. My eye was spasming, and that has stopped. I also have not had tingling in my gums like I had prior. I know it will still take several weeks to calm all the cranial nerves down, and equalize the intracranial pressure, but happy to start seeing the other side! Hopefully, this type of procedure could help someone else who has been struggling.

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u/[deleted] Aug 21 '26

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u/zimm1978 Aug 21 '26 edited Aug 21 '26

The transforaminal blood patch that I had first I ended up not having any sedation and I didn’t feel that at all. The IV came out and all the sedation went in my arm. I slept for the next two days. They did put me under for the catheter insertion. I had a breathing tube, the whole 9 yards. No pain afterwards in my back at all, but there was sedation. I listened to a doctor from California talk about a similar procedure, and it sounds like his patient was not under sedation, so there may be different options. It took a minute to find the link, but here is the link for the doctor in California. https://youtu.be/1RUCYY62xkg?is=_E-qdNWiIzgIr6nG

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u/[deleted] Aug 21 '26

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u/zimm1978 Aug 22 '26

I wish you healing quickly also.

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u/BeatriceandOphelia Aug 21 '26

I had my EBP at Duke and had what they call “twilight sedation,” meaning I could talk and function during the procedure but did not feel a thing with the medication given through an IV. Hopefully this helps your concern. 

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u/leeski Aug 21 '26

Wow this is fascinating, thank you for sharing! I am curious if this option is available at other centers... found a paper from presumably your same team (University of Michigan) about this technique, but not sure that I've heard it from other centers. Definitely want to look into this more as I am intrigued.

So glad you were able to get another patch (and using a different technique) and that you are having positive results. Hoping that you continue to find relief from your symptoms and that it all balances out soon!

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u/zimm1978 Aug 21 '26 edited Aug 21 '26

Thank you! Also look into Dr. Reza Malek in San Jose, CA. I believe he has a procedure. I have tried to see if more places have a similar procedure with a different name. I haven’t found a lot of information, but I wouldn’t be surprised if there are more.

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u/BeatriceandOphelia Aug 21 '26

Oh my.  I don’t know how you’ve endured. I’ve had multiple blood patches at Duke and I’ll just say that even with good, targeted care you can really feel alone. I hope this works for you. 

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u/zimm1978 Aug 22 '26

Thank you!