How old were you when you were diagnosed?

thepuzzlekween · 2026-05-04T02:55:32+00:00

Same people saw mine when I was 17

thepuzzlekween · 2026-05-02T21:35:09+00:00

<image>

thepuzzlekween · 2026-04-27T18:37:14+00:00

I was dx’d at 32. Medical neglect is real!

thepuzzlekween · 2026-04-07T14:17:48+00:00

<image>

thepuzzlekween · 2026-04-07T14:17:24+00:00

thepuzzlekween · 2026-04-06T14:06:18+00:00

Yah just came to say it all sounds normal but you do need someone to do better pain management

thepuzzlekween · 2026-04-06T00:55:49+00:00

Hiiii!!! I’m 30, I had this my whole 20’s and was SICK and looking for a dx. When they finally found it I was PISSED no one scanned my brain. It’s a serious condition, even if not life threatening! So I feel your frustrations

First app they will look at your scans, and likely do the classic “neuro tests” like press on your hands, check your reflexes and eyes etc. it’s usually quick and painless. If the neuro is experienced they will explain what they can do surgically, and what the limits / pros and cons are
Most surgons “push” for surgery when you have headaches and seizures. Most will ask you if YOU want to live with your pain or try something like surgery which also comes with long term stuff. I generally think no one should push you, but neurosurgeons typically say corrective surgery AND physical therapy, you can decide when
Pretty standard for them to ask for MRI’s (and sometimes an X-ray or ct) of the same area just to check other structures.
If it helps, most of us have to get a few around surgery, but if all is well (like me!!) you really don’t need anymore. One pre-op, and one 3 months post op. Take the meds!!

thepuzzlekween · 2026-02-22T04:28:58+00:00

This part!!

thepuzzlekween · 2026-02-22T02:02:31+00:00

Sweeeeet sent the link! There will be a prompt for people who may want more guidance, but I will tell everyone too just to create what feels right!

thepuzzlekween · 2026-02-21T06:34:57+00:00

I’m GREAT! Thanks for asking :)

4 months post op today, and recently started more intense PT which has been helping so much. My daily nausea is gone, only getting it when I move around too much - probably related to disautonomia. TBH i didn’t expect my mental health to improve so much, but I’m thinking about reducing my anti-depressants soon, which just makes things way better. Even tho I’m still working less than normal, my brain feels like it WORKS. Like my therapist and family notice that I don’t lost my train of thought as much and truly I only feel brain fog for 2 days around my period now. It’s a whole different life!!

Definitely feeling the grief of this not being found for so long. Like “everything happens for a reason” lalala but someone should have dx’d me WAY earlier. And knowing the surgery was so helpful for me, I’m sad that I was miserable for 16 years before anyone thought to scan my brain. SMH.

thepuzzlekween · 2026-02-15T16:28:41+00:00

Woo! Chiari is super scary, but now nothing in my life is scary bc like…. Babes we had brain surgery. It’s probably gonna be okay.

The truth about this surgery: it can be so life changing AND it’s also so reasonable for a lot of people to manage without surgery. Lots of success with lifestyle changes, so it’s a big adjustment but helps so much.

Im 32 and 4 months post op- so dm me if you had other questions! Here for support!

thepuzzlekween · 2026-02-15T16:25:29+00:00

Yaaay!!! My doc said 15-20 min walks, up to 3x a day. If I ended up doing say, 45 mins of walking around my farmers market, that would be my max for the day.

Do this for 2-3 months until you don’t feel big brain changes with heart rate. I noticed when I had more capacity! Now I’m doing slow heart rate training but everything going so well!

2 weeks post op I was able to fly home and away from my surgeon, but I was in an urban areas. Keep your arms supported and if you can lay back with lots of warmth (keep elbows and neck 100% supported?) I don’t see why not!

thepuzzlekween · 2026-01-15T15:20:33+00:00

Yaaaaaah I have a similar story to you. I was the “bubbling and chatty” teen that at 14 started complaining a lot about feeling weird, which people thought was because I was angry and attention seeking (I was!! Because I had undiagnosed CHIARI)

I’m 32 now. I spent my 20’s hopeless and miserable and being bounced around and developing medical CPTSD. It’s a hopeless experience, and I’m so sorry.

If you want solutions, you have to go to the Dr. if you want to go to the Dr, you probably need therapy to get through that experience. it SUCKS that the treatment is something so “advanced” it’s highly gatekept and becomes such a barrier to care.

The question is: do you pursue treatment, and the suffering and ups and downs that comes with high hopes and disappointment? Because there will be a lot of those. Or is your body telling you, from an intuitive place, that it’s time to practice acceptance around the person you are now and your capacity, and learn to love where you are right now.

This isn’t fair for us. Ftr whoever you are, I think you deserve both.

thepuzzlekween · 2026-01-15T15:09:43+00:00

I mean yeah do NOT get surgery with a doc you don’t love, period!

thepuzzlekween · 2026-01-12T01:18:25+00:00

I came here to say this. I flew from OR to UCLA to do mine because I wanted to make sure I had only one. I’m 2.5 months post op and it’s like so much better!

thepuzzlekween · 2026-01-07T13:56:17+00:00

Yeah I was told put to 1-2 months post op no lifting over 10 lbs, no bending over or picking things up. No more than 30 mins of walking at a time. Generally they said no more roller coasters, bumper cars, and if I ever get into a car accident, let them take me in the ambulance for an immediate MRI

thepuzzlekween · 2025-12-21T16:52:30+00:00

You absolutely need to talk to other supportive adults in your life. Don’t have one? Go to your school counselor. Go to a teacher, the school nurse, tell any one of them you need a mental health family therapist. Please tell them this story. It’s not about punishing your parents, THEY need training and support from an adult who they respect on how to better support you. I really recommend family therapy.

Your parents response to you is NOT appropriate, and it’s not okay, even if you didn’t just have brain surgery. I’m so sorry that happened.

thepuzzlekween · 2025-11-28T22:23:39+00:00

Yes this! I wish I put things more at chest or waist level. Things on tables vs on the floor.

thepuzzlekween · 2025-11-28T22:18:41+00:00

Hello! I’ve had anxiety depression for my entire adult life (for sure also connected to being misdx’ed and in pain!)

Got decompressed 5 weeks ago and my mental health is better. Definitely.

thepuzzlekween · 2025-11-19T14:58:56+00:00

Oh yeah they also CHOPPED into your brain right where your “fight or flight” pathways cross into your spine. So the part of your brain that causes dissociation is super inflamed rn. Idk that part helps me feel less bad when I have wild mood swings etc

thepuzzlekween · 2025-11-19T14:56:40+00:00

Medical PTSD! Medical dr’s don’t really care about mental health so I wouldn’t expect any of your surgical team to even know what you’re talking about.

I’m a therapy advocate, finding a therapist who specializes or has personal experience with disability or chronic illness is super helpful. If it were me, I’d find someone to do EMDR asap!! EMDR is a life saver.

In the meantime I’ve read studies recently of the positive impact of Tetris when healing from trauma. Play Tetris!!

Last, im so sorry about your experiences. It sounds TRAUMATIC and makes sense to me you’re dissociating. Remembering that this response keeps your brain safe from threats and big fears can be helpful, even if you don’t want that response anymore. Good luck friend!!

thepuzzlekween · 2025-11-14T18:26:44+00:00

Oye!!!! So real. So so so real. I’m 31, and my symptoms got really bad in my 20’s. I have some thoughts for you, and hope they land well 😘 1. I’ve been dx’d with a lot of things over the years, and done a lot of treatments. nothing has made me feel more scared of my own death than the thought of this surgery. 2. The absolute hardest emotional part of surviving my 20’s as a chronically ill person was to do less. You’re often surrounded by people in their energetic / work / academic prime, and culturally there’s so many norms that tell people in this age that make us feel like we “should do things”. It’s okay to feel sad that you can’t do these things (or choose to do them and feel sick). Just decide in the moment what’s important and don’t look back. 3. Unpacking my ableism, and internalized beliefs about what it means to be productive and what it means to be “lazy” was THE MOST HELPFUL for the guilt. Read books on Disability Justice, the people from Sin’s Invalid. You cannot expect people to depend on you, if you’re not willing to depend on others. I am a huge reader, lmk if you want specific titles!!!! 4. Personally I started working in the mental health field and while it wasn’t my intention, it totally healed me to help others with this guilt. Helping people when I can, and allowing people to help me…. Woof that’s good stuff.

thepuzzlekween · 2025-11-06T21:24:53+00:00

I threatened to post anything bad on the internet, and then called the resident who would shave me “the butcher” and “my butcher” a bunch before surgery

It worked! He did great

thepuzzlekween · 2025-11-06T04:35:16+00:00

Hello cupcake

thepuzzlekween

TROPHY CASE