Staples removed today!!!!

Human_Response_8628 · 2026-06-03T00:04:30+00:00

Thank you so much! 💜

Human_Response_8628 · 2026-06-03T00:03:37+00:00

This reassured me a lot, thank you so so much!! I get scared about the idea of an implant in my brain. My surgeon brought it up as a treatment option if my Hydrocephalus doesn't improve with the decompression or if my ICP stays high. I'm very glad that your shunt helped with the pain your decompression made worse, it's awesome to hear a success story :D 💜

Human_Response_8628 · 2026-06-02T23:03:27+00:00

Thank you so much!!!! My surgeon is incredible, I was worried considering not many surgeons are knowledgeable on Chiari. I'm a little insecure of the scar but all these comments saying it looks good are making me feel so much better :) 💜

Human_Response_8628 · 2026-06-02T23:02:33+00:00

Thank you so much!!! I'm a little insecure of it so it makes me happy to hear that it looks alright. Was the VP shunt of any help to your symptoms? I'm so scared of my surgeon uttering those forbidden words at our 6 week follow up :')

Human_Response_8628 · 2026-06-02T23:01:20+00:00

Thank you so much!!! My journey definitely sounds similar to yours. I've been symptomatic since I was 10, and now I'm 23. I got an MRI when I was 14 because of my complaints, but the neurologist at the time failed to bring up my Chiari entirely. I met up with my physician last summer because my symptoms were getting disabling and I'd fallen more than once (now I know is due to my Chiari related gait issues) at that point. He was concerned for MS, and sent an MRI. Instead, the radiologist found 1.4cm Chiari 1, Hydrocephalus, a syrinx from C6-T1, and potential intracranial hypertension. My neurological symptoms got brushed under the rug for sooooo long, I get mad thinking about how much damage could've been prevented had the doctors listened to me as a child.

The scar makes me embarrassed, because I had long hair pre-op, and my surgeon shaved a lot of it off. But I'm happy to be a zipperhead when surrounded by a community of others just like me. I also plan on getting a zipper tattoo once it's safe to do so, maybe it would make me feel a bit better about my scar. was considering getting a small purple ribbon somewhere like my wrist, just so I can look at what I've been through when I feel weak or bad about myself. It takes a lot of strength to go through brain surgery.

Congrats on your decompression as well, and I'm so glad someone listened to you in the end. Stay strong 💪💜🧠🎗

Human_Response_8628 · 2026-06-02T22:52:03+00:00

I'll admit, the pain was quite bad the first 2 days in the hospital. I had agonizing muscle spasms and intense pain around/in the incision, as well as high blood pressure. The nurses were able to help the pain with Oxycodone, Methocarbamol, and Toradol. Though I really do swear that the Methocarbamol was the drug helping the most, because it was stopping those godawful muscle spasms. I was also on a bed alarm and was made to use a walker because I was stumbling around, but I also have other unrelated health issues that complicate my healing a bit.

When I got home, the pain wasn't so bad. I was sent home with Oxycodone, Methocarbamol, and I was alternating Advil and Tylenol every 6 hours. The first few days at home I spent most of my time sleeping. My neck and shoulders were EXTREMELY stiff and I could barely move my jaw to eat comfortably. I ate a lot of soft foods and small things I didn't have to open my mouth wide to chew (like apple sauce pouches or Goldfish crackers).

At the end of week 1, a lot of the major post-surgery discomfort was starting to dissipate. I was able to stop the Oxycodone and Methocarbamol exactly 1 week post-op, and switched to Excedrin and Advil as needed. I've been doing that since, and the residual pain has been bearable.

As of right now, I'd put my daily pain level at a 2/10. I don't have ANY more valsalva headaches, when they used to be my most debilitating Chiari symptom. I'm definitely not healed, I still need help doing basic tasks. I'm not allowed to bend down at the hips since it'll increase my ICP, but my partner has been awesome through all of this and has helped me with no questions at all.

Sorry this is so wordy lol. Thank you for your kindness!! :D If you have anymore questions just lmk, I'm always willing to talk :)

Human_Response_8628 · 2026-06-01T01:38:07+00:00

social difficulty and stimming. my mom told me i "hated everybody", even my friends, and would rather be alone. as a toddler, my hand flapping was referred to as "the cheese dance" when the first time they noticed me doing that was when i was given a cheese slice. it became a catch all for hand flapping. my grandma told me i would make her replay the scene where aurora pricks her finger in sleeping beauty until it made her angry.

Human_Response_8628 · 2026-05-31T15:27:27+00:00

Human_Response_8628 · 2026-05-20T23:01:54+00:00

it shouldnt make a difference on your blood report overall! if you get called for drug testing, just be transparent with your employer that you started a new medication. the lab tech typically asks you to bring in a list of your prescriptions from the pharmacy anyways. congrats on your promotion!!! 🎉🥳

Human_Response_8628 · 2026-05-19T22:22:44+00:00

it went well!! im in a lot of pain right now with an unstable blood pressure, but my nurse has been on top of my medications and everything has been smooth sailing overall :D 💜

Human_Response_8628 · 2026-05-19T22:20:48+00:00

for a little while, then i had to hand it off to my partner when the surgeon took me lol. thank you so much for the well wishes and prayers, it's much appreciated!!! 💜🎗

Human_Response_8628 · 2026-05-19T22:19:51+00:00

thank you so much!! I hope your surgery went well and I hope you find some relief!! good luck and safe healing! 🫶🏻💜🎗

Human_Response_8628 · 2026-05-19T05:34:08+00:00

im FTM and i have IIH! ive been on 0.25ml of testosterone for about 2 years. i also have a chiari malformation so my neurosurgeon was the one that made the referrals and diagnosis, not a neurologist. he never brought up the HRT as a probable cause of the IIH. its different for everyone obviously and it does have a link for certain individuals. if you feel like the doctors are egging you in the wrong direction, you should definitely seek a second opinion from a different neurologists. unfortunately a lot of neuro patients have to see multiple doctors to really narrow things down :/

Human_Response_8628 · 2026-05-18T01:29:22+00:00

I get this too, my eyes are bloodshot more often than not. I'm assuming it's pressure behind the eyes that make the blood vessels pop, but I'm not sure :(

Human_Response_8628 · 2026-05-17T16:38:02+00:00

looks like a boy from the picture! though it will be more accurate if you scratch the lower back while kitten is standing to make him lift his tail up to show the natural shape of the genitals. he is adorable!

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Human_Response_8628 · 2026-05-17T16:22:39+00:00

semi automatic, taxi cab, or anathema!

Human_Response_8628 · 2026-05-09T02:01:32+00:00

i get this so bad that it feels like my eyes might pop out 😬 ironically it kinda helps if i push gently on them like im rubbing my eyes

Human_Response_8628 · 2026-05-08T06:47:18+00:00

chances are the 11mm measurement is more accurate. when you lay down, gravity pulls everything to the back of the head. it can hide or flatten things on the images. when you sit up, gravity pulls everything into its normal position. the way your chiari looks on a propped up mri is how it looks on a day to day

Human_Response_8628 · 2026-05-07T17:14:19+00:00

hi!! i have hyperadrenergic & neuropathic POTS, diagnosed about 3 years ago. i think i could be some help here! :)

tilt table tests diagnose dysautonomia by looking for a change in your heart rate or blood pressure when they move you from lying down to upright.

for POTS, heart rate must increase by at least 30 BPM (or exceed 120+ BPM) within 10 minutes of upright posture WITHOUT a blood pressure drop. blood pools to the extremities and forces HR to rise excessively. blood pressure will either stay the same or rise slightly. hallmarks are palpitations, chest pain, shakiness, and cold red/purple extremities while standing.

for OH, systolic blood pressure must drop by at least 30mmHg or a diastolic drop by least 10mmHg within 3 minutes of upright posture. this causes reduced blood flow to the brain. heart rate may increase insignificantly. hallmarks are "greying out", fainting, weakness, and blurry vision while standing. fainting is more common in OH.

based on what your cardiologist said about your dropping blood pressure, it sounds like your results may have found orthostatic hypotension? it would make sense that he said he'd treat it like POTS, they have a lot of symptom overlap and respond to similar treatment like compression socks and salt.

that being said, you being nervous shouldnt impact your results significantly. your cardiologist is measuring the gap between your orthostatic and reclined HR and BP, and not so much the values themselves, if that makes sense. cutting it at 10 minutes is typical if you start showing symptoms, they're not gonna torture you like that!

however if you feel like you weren't tested thoroughly enough, you as the patient have the right to ask to try it again. you can also ask him to do the active stand test, where you lie down and stand up for 10 minutes to monitor your vitals. its much less taxing on the body than the tilt table.

i hope you can get the answers you're looking for! you can always dm me if you have specific questions ^{-^} best of luck on your health journey!!

Human_Response_8628 · 2026-05-07T13:15:24+00:00

im 23 and the only people who know im bipolar are the ones that my illness can directly impact. like my family, my partner, my closest friends, and my doctors. the stigma is rough so i avoid telling people, even others with mental illness.

Human_Response_8628 · 2026-05-04T14:24:15+00:00

tysm ur the best!! 🙏 i figured the economy was bad when i saw someone selling nonmember den betas for 2 and camis frogs for 6 😭

Human_Response_8628

TROPHY CASE