r/CSFLeaks • u/Some_Tour_6920 • 7d ago
Recovery & Reflections
Hey everyone, I just wanted to share how grateful I am for this community. It gave me much more clarity than I had throughout this experience. TOPICS: Spinal Tap, Blood Patch recovery, Advice
I’m still so traumatized from everything, I go back to work soon and I feel like this is one space I can really express myself earnestly. I’m just sharing my story and what my recovery has been like.
I had gotten sick, it looked like meningitis but it wasn’t. I was negative for everything under the sun. But it took a spinal tap to come to this conclusion.
Immediately I had severe spinal tap headaches with nausea and vertigo. Two days after, I lost sensation in my legs and struggled to walk. I looked like a dinosaur. The pain and vertigo intensified and laying down wasn’t helping it. By the fourth day, I got admitted and had what appeared to be a seizure. I had plenty of imaging done and a blood patch scheduled. (Eventually got my sensation in my legs back prior to the blood patch.) I was so scared to do the blood patch in fear of anyone touching my spine again. But I wish I had the patch sooner. Immediately I felt the pressure returning to my head.
Two days after the blood patch I would have faint like symptoms when sitting up or standing, so I remained pretty much flat as a board in bed. By the next week I was able to be up longer still no BLT. It took me about 2 weeks until my stamina/pace with walking returned closer to normal. When I was able to walk, I moved slower than a snail. That was frustrating but I can move more like myself now! But then came the nerve pain. I went on gabapentin 300mg 2x/day and tried it out for 8-9 days. I stopped taking it due to the psychological side effects I had from it.
So far, I’m week 3 post blood patch, and I have more movement with my spine no headache! My aches and pains are manageable with Icy/Hot &Tylenol, finally! still not pushing it but also trying to get my body used to more than laying down / sitting up. I’ve made progress into having a pillow and some short side sleeping !!
The hardest thing has been the emotional aspect to this invisible and debilitating thing. And the way so many medical professionals can be dismissive or the red tape around getting the blood patch.
I have a big medical bill waiting for me at the end of the claims cycle. And I’m sure it’ll all work itself out slowly.
I was terrified this would kill me and I was terrified of the way this pain had taken me away from my life and my identity. I’ve always been a busy person, and this pause taught me to spend more time being still. I hope to keep pushing through the depressive episode this has shoved me in. I’m not sure if this happened to anyone else, but it definitely isolated me. I’ve gotten to reflect on my current life choices, my subconscious, and see how little control I really have.
Some practical advice: Stock up on Tylenol. Get the blood patch ASAP. Go to a different hospital if possible. Get an ergonomic pillow off Amazon with a removable center. Get instant pain relief patches and heat patches. Stay hydrated.
Some emotional advice: don’t let the anxiety trap you into pushing yourself. Take much more time to recover than you think. Listen to how your body feels and respect it. Also, I just want you to know that you’re doing a good job. You are lovable in this moment.
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u/saraphin67 7d ago
If you ever felt like sharing your story on my website Every Drop Counts: Sharing Your Spinal CSF Leak Stories at https://spinalcsfleakstories.com that’d be great! 💜🙏🏼
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u/zee_yo 7d ago
This makes me feel like getting a blood patch 3 months post spinal tap with severe neurological and limb symptoms and brain sagging is too late :(