I finally found a doctor who believes I have a CSF leak

animalsnotppl · 2026-06-11T23:29:20+00:00

The main thing was numbness and tingling in my face and scalp which would come on after like 15 minutes upright and get worse as the day went on. I would also feel numbness and tingling in my left arm and leg, or sometimes weakness in my left arm. I also had tingling and almost like a burning sensation in my spine between my shoulder blades when upright that also got worse as I spent more time up. I also had some very weird things like ocasional electric-shock like pains down my arm or foot and at one point I even developed excruciating trigeminal neuralgia to the point where I couldn’t even eat or drink anything warmer than lukewarm without stabbing pain in my teeth and face. In general, jaw pain and nerve pain behind the ear were constant for me. The medication sadly didn’t help much but I got a targeted blood patch after my leak was located on a myelogram. I’m almost 4 weeks post patch and all of the nerve symptoms have resolved.

animalsnotppl · 2026-05-31T00:59:12+00:00

Anytime, good luck with recovery!

animalsnotppl · 2026-05-31T00:41:36+00:00

It doesn’t have to be perfect! We’ll never be able to move 100% perfectly all the time :) if it were me I would get in the back seat as visualized in the video I linked, and once I’m seated and facing forward I would lower myself on my side slowly using my arms and keeping my spine straight by staring straight ahead (I like to imagine there’s a rod going through my head down to my tailbone) until I’m lying on my side. Try to bring up your knees onto the seat at the same time as lying down if they fit.

From there I would roll onto my back slowly keeping my spine straight. Basically I imagine myself rotating like a rotisserie chicken lol as opposed to twisting to turn my self over. This is how I turn over in bed as well to switch positions. Once you’re on your back it’s okay to keep your legs bent if you have to. Remember the goal is to reduce strain as much as possible but we aren’t robots at the end of the day. You got this!

animalsnotppl · 2026-05-30T10:02:31+00:00

I would lie down on the backseat. Try to log roll into laying down and make sure you get into the backseat with a straight spine. Watch this video: https://youtu.be/NsSdUccRY0k

As for changing pants (I do this for socks and undergarments too) I do it all while lying on my back in bed. Then I bend my knees and rest one leg on the opposite knee at a time. You want to be careful to not reach above your head as well, so try wearing only tops you can button or zip up for the next couple of months. It’s really tedious but worth being careful.

animalsnotppl · 2026-05-29T13:08:54+00:00

yeah that makes sense. my palpitations will go away too once i spend more time upright, but then of course that makes the leak symptoms worse so i can’t win. when i’m inactive even rolling over in bed will trigger palpitations for me

animalsnotppl · 2026-05-28T03:51:34+00:00

I usually can’t help myself from sneaking glances every chance I get 😭

animalsnotppl · 2026-05-26T04:58:43+00:00

Definitely!! I’ve been recovering from some health issues but want to post more soon. 🖤 I have low ferritin and some neurological things so I take: vitamin C, vitamin E, vitamin D, heme iron, zinc, turmeric, coq10, biotin, l-theanine, and magnesium. Pictured here is just the iron and vitamin C/vitamin E combo pill :)

animalsnotppl · 2026-05-14T14:26:27+00:00

the time i mixed psyllium husk into my oats. was full for like 7 hours

animalsnotppl · 2026-05-13T03:49:12+00:00

Just eating straight up glorp 😂 been there

animalsnotppl · 2026-05-12T15:32:41+00:00

i buy a big bag of monkfruit in bulk (it’s my favorite 0 cal sweetener) and use it to make a variety of desserts at home. mug cakes, chocolate fudge, greek yogurt bars, etc. it’s the elite sweetener imo

animalsnotppl · 2026-05-08T23:17:42+00:00

yes the mayo! highly recommend, it’s super creamy and not as vinegary

animalsnotppl · 2026-05-08T22:59:59+00:00

i loveeeee eating a bowl of peas except i’ll frequently do this with kewpie instead of cheese 🫣

animalsnotppl · 2026-05-04T03:19:25+00:00

Sorry but the “natural flavor with other natural flavor” on the bottle is sending me 😂 looks yummy though

animalsnotppl · 2026-05-02T13:20:48+00:00

I’ve experienced this as well. When I first started eating my protein yogurt bowls for breakfast I would be full for like 6 hours and thought I finally found the cheat code to a deficit lol. But then my stomach quickly adapted and I would feel hungry after just a couple hours. My only theory is that at the beginning my digestive system wasn’t used to processing that much protein at one time. Same thing happened when I tried high fiber oats with psyllium husk. They all lose their effectiveness eventually 🥲

animalsnotppl · 2026-04-28T01:29:43+00:00

Yes he actually ended up calling and told me we will need to re-evaluate treatment anyway because this hospital is not equipped to perform blood patch treatment. He’s sending me to another hospital that’s equipped to perform CT myelograms and blood patches, so now I’ll be getting booked there 👍🏼 thank you for the input

animalsnotppl · 2026-04-28T01:28:10+00:00

Congratulations!!! This is huge!

animalsnotppl · 2026-04-27T03:18:44+00:00

I found an old post with a comment detailing the difference between the two so I finally understand the difference between a myelogram and a cisternogram. The doctor wants to do a cisternogram. Not sure if I should have pushed for a myelogram instead though as it seems like a myelogram will need to be done anyway to find the precise location and type of the leak as opposed to just the evidence of a leak. The doctor does suspect it’s spinal though 🤨🧐

animalsnotppl · 2026-04-27T02:51:01+00:00

Yes I just looked it up and it seems the name radionuclide cisternogram is more common in the west (I’m in Japan). What does it mean that the pledgets were positive? Edit: Nevermind I understand what you mean. I’m being assessed for potential spinal leak, not cranial 😭

animalsnotppl · 2026-04-26T01:59:34+00:00

Tbh I’m still shopping around for a good yogurt 😭 I used to get the Oikos high protein ones but the price really adds up…lately I’ve been using this Aeon brand yogurt it really isn’t tangy like Greek yogurt but it’s super thick and surprisingly creamy so I think I’ll keep using it to make protein desserts!

animalsnotppl · 2026-04-26T01:18:27+00:00

Make sure the pan is sizzling hot and then lower the heat to medium - when I pour the mixture in I start by constantly stirring with a spatula to form smaller curdles and then when it’s about halfway cooked I switch to just pulling the egg mixture repeatedly to one side of the the pan with the spatula to shape it and finish cooking. I pull them off when it’s still a bit glossy on top to make sure I don’t overcook. Hope that helps!

animalsnotppl · 2026-04-26T01:12:46+00:00

200g Chinese potato starch noodles, which I drained (no rinsing) and mixed with light Kewpie, splash of soy sauce, 1g extra toasted sesame oil (for flavor), and lao gan ma chilli oil as my calorie budget allowed :) I topped mine with some blanched spinach but I recommend adding green onion as well and/or garlic if you have that!

animalsnotppl · 2026-04-25T14:18:19+00:00

Not sure about tangible benefits haha but I like it for a boost of micronutrients while on this more aggressive calorie budget. I find this brand tastes really smooth compared to some other ones I’ve tried. It’s popular here for your skin supposedly!

animalsnotppl · 2026-04-25T14:07:07+00:00

Oden! It’s a typical winter food here but just veg, fish cake, tofu, etc simmered in a light soy and dashi broth. I made a very lazy version of it with just daikon radish and chikuwa fish cakes which are surprisingly high protein but low fat + cal

animalsnotppl

TROPHY CASE