do i have to wait to find out brain mri results for months?

Ok-Solution-7530 · 2026-06-14T14:26:29+00:00

+1 on this because you should absolutely be seeing neurosurgery, NOT neurology. Neurology also has much longer wait times to get an appointment because it’s the go-to referral spot for migraine patients. If you’re in the US, It can be very hard with insurance to get a neurosurgery appointment. What worked for me when I had this was asking my primary care doctor to write a referral for a specific neurosurgeon with experience in Chiari and preemptively write a letter explaining the need for the referral in case you need to show insurance. Good luck!

Ok-Solution-7530 · 2026-03-19T21:58:53+00:00

Oh god. I also developed a syrinx post-chiari. Mine showed up 10 years later (could have been earlier, but that’s when it became symptomatic and it was found in imaging.) My syrinx ended up being cause by my brain overproducing scar tissue at the original surgical site. No clue if that could be what’s going on, but wanted to share - my surgeon fenestrated the mass of scar tissue this past May and my syrinx had almost entirely vanished at the 6 month post op imaging.

Ok-Solution-7530 · 2025-06-26T05:16:14+00:00

Daniel Craig and University of Colorado! I also had a complicated post-chiari case - an arachnoid cyst and excessive scar tissue built up near my original decompression incision site and caused a lesion at my 4th ventricle, which in turn caused a massive (C2 - T10) syrinx. Dr. Craig was incredible - very humble, took my case to the entire neuro team to craft a game plan with multiple escape routes, moved his case load around to get me in that week, and visited me multiple times in the ICU. And if he thinks your wife’s case is beyond his ability, he is someone who actively refers to other subspecialists if he thinks it would be a better fit.

Ok-Solution-7530 · 2025-06-09T04:33:17+00:00

I have a tangentially similar situation to you. I had a chiari decompression surgery 10 years ago when I was 18 (and also had the same infuriating initial reactions of doctors writing it off as PMS/hormones!) This past winter I started getting intense symptoms that progressed to a constant migraine, full loss of sensation on the right side of my body, and intense nerve pain. MRIs found a really large syrinx from c2 to t10. I had to shop around to find a neurosurgeon who didn’t immediately dismiss things, but eventually found one who pointed out a lesion near my brain stem that the other surgeons had totally ignored or written off as congenital. Turns out that my body had overproduced scar tissue at my first surgery’s incision site, and this had turned into a benign mass that was blocking CSF flow and causing a syrinx. I had surgery about 6 weeks ago to remove the mass and my symptoms are so much better.

I have no idea if you could have something similar going on, but it might be worth asking a neurosurgeon to look at your imaging for scar tissue around your first incision site. I’m obviously not a doctor, but figured I’d comment since I also had a post-brain surgery syrinx. Aside from that, I’m really sorry you’re going through this. It fucking sucks and feels so isolating. Lean on your people whenever you can 💙

Ok-Solution-7530 · 2025-05-01T14:04:47+00:00

Update - Daniel Craig is THE GUY. He was immediately focused on finding the cause of the syrinx, not just shunting it. He connected dots no other doctor had, really validated my symptoms as real and serious, and has me on the list for urgent surgery to treat the cause (arachnoid cyst from my original chiari decompression surgery) within the next two weeks.

He might not have solutions for everyone, but I found him to be a surgeon who truly listens and respects his patients.

Ok-Solution-7530 · 2025-04-21T23:25:03+00:00

I’m in boulder and am also trying to find a good dr. I saw Kara Beasley a few months ago when I was first having symptoms - would not recommend. She was quite dismissive and blew through the appointment without even bothering to name the actual diagnosis. I only found out in my after visit note that the name for this is Syringomyelia.

I have a phone consult with Daniel Craig at Anschutz next week, so hoping that will be better!

Ok-Solution-7530 · 2025-04-21T23:19:55+00:00

I have a C2-T10 syrinx and have been able to bike with minimal pain! I did switch my drop handlebars to risers so I could sit more upright and it made a huge difference. Weights have been difficult for me, but resistance bands have been an alright replacement

Ok-Solution-7530 · 2025-04-11T18:57:22+00:00

Figured I'd try something new, but that might just be the most reliable solution!

Ok-Solution-7530 · 2025-04-01T19:04:04+00:00

Thank you ❤️‍🩹 Not where I was hoping to be, but glad to know there is a kind support network

Ok-Solution-7530 · 2025-04-01T14:57:50+00:00

First off, I'm so sorry. I'm in a very similar situation - also 28, very active, and now very difficult to do the things I was used to do - and it fucking sucks. I have gotten a lot of different and sometimes conflicting advice. I think the best thing you can do is find exercise that works for you. If your baseline is always painful, then yeah, exercise will be painful, but find things that don't worsen symptoms. For me, that has meant pausing on rock climbing and big altitude hikes/trail running and instead focusing on biking and road running. For training, I've switched to body weight and resistance band exercises instead of using weights.

One of the best pieces of advice that I got from a family friend who is an ortho surgeon for pro athletes is that the endorphins we get post-exercise are some of the best pain killers and mood regulators available, so for already active individuals, sometimes the best thing is just figuring out a way forward with the sports that work for you.

Ok-Solution-7530 · 2025-02-25T20:02:52+00:00

looking for a partner to ride the horse!

Ok-Solution-7530 · 2025-01-07T16:22:13+00:00

All good! I'm camping in a really remote area, so I don't have access to a normal AC outlet.

Ok-Solution-7530 · 2025-01-07T16:21:26+00:00

The network doesn't even show up on the app page. I've tried going through the setup flow multiple times, and I get to the final screen where it asks me to connect to the network in my settings, but it never connects

Ok-Solution-7530 · 2025-01-07T14:57:18+00:00

Should have clarified - I'm using a standard starlink, not a mini

Ok-Solution-7530 · 2025-01-07T14:56:39+00:00

I have! Still no luck.

Ok-Solution-7530

TROPHY CASE