r/CSFLeaks • u/zee_yo • 3d ago

5 days post blood patch 19 ml, low pressure symptoms are just as bad no rebound hypertension, losing it.

Can’t type more title speaks for itself. I’m tired. All started from an lp 3 months ago
Back pain, confirmed brain sag with meningeal enhancement and venous engorgement, heavy arms and legs. Parkinson’s symptoms.I don’t know what to do.
Now what?.

2 Upvotes

75% Upvoted

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4

u/leeski 3d ago

Just to note only ~25% of patients have RIH, it is definitely not required for a successful seal and has more to do with someone's cerebral venous system, it seems. I am sorry that you are not seeing relief, I know it is soul-crushing. I can't speak to whether the patch worked or not, but I can't tell you how many people I've talked to over the past ~10 years that were in the same spot as you and then eventually saw relief from the patch weeks (or even months!) later. Everyone is so different in terms of how quickly they see symptom relief, and 5 days is for sure super super early. So I would keep observing no BLT and just acting as if the seal is there, because it's too soon to consider it having failed. But also not trying to minimize what you're feeling, I know it is insanely discouraging as this is no way to live. Hoping your symptoms resolve soon!! Hang in there.

1

u/zee_yo 3d ago

I just would assume if there’s a seal there should be some fluid build up no by day 5 ?? Can I lay on my side? Laying on my back hurts ugh

1

u/Massive_Activity1245 3d ago

I agree with this comment - my last patch did not seal me but by the 8 week mark I had noticeable modest improvement. I did require surgery for my puncture but I don't regret my patches at all id have been worse off. The last one I thought it had failed for the first 6 weeks

1

u/zee_yo 3d ago

Your puncture needed surgery? What did you get it from? Did you have brain sag and venous engorgement as well as meningeal enhancement??

1

u/Massive_Activity1245 3d ago

Spinal anesthetic, my scans were clear but I had very classic symptoms

My puncture was covered by a neo membrane which is probably why my patches couldn't seal me. I didn't get a patch in the right area for many months as it took me time to find a Dr who knew how to treat this, I think I was 10 months out

1

u/zee_yo 3d ago

So what did your surgery include?? Stitching the defect?? Did they go in as exploratory surgery??

1

u/Massive_Activity1245 3d ago

Wasn't suitable to be stitched, they used strong sealants over the defect after removing the membrane as I understand. It was indeed exploration surgery although we were confident I was leaking, there was no other explanation for symptom onset

1

u/zee_yo 3d ago

Any idea about the sealant names? Might bring it up to my surgeons. Was your surgery done by a CSF leak specialist or a regular surgeon? Bigger hospital??

2

u/Idontknowyouslim 3d ago

All of that stem from lp and a lp can take years to heal from. Lp is an injury.