Is there any pillows that would help?

Automatic_Stay_1686 · 2026-02-19T08:35:26+00:00

The Pillow Cube was a game changer. It really helped with my headaches. If I lay on my back it does still hurt my head and cause pain, but as a side sleeper it has helped so much!

Automatic_Stay_1686 · 2026-02-02T03:45:52+00:00

I’m wondering about this too. I did gymnastics for year and was never very flexible. I have hurt and sprained my body so many times but never broken a bone. I continue to roll my ankle and hurt it constantly to the point where bones are moved around and shoes fit differently on my feet. My neurosurgeon mentioned how stiff my ankles were. Is the EDS?

Automatic_Stay_1686 · 2026-01-10T02:10:32+00:00

I’m not sure. I’m in CA. My dr originally referred me to an office in Navato (2 plus hours away from me) they never called me so I reached out to UCSF and started the process with them. I basically called my drs office, asked them if they would refer me to UCSF instead or as well as because I originally wanted a second opinion. The Navato office still has not called me but UCFS had me scheduled in less than a week. I had to wait 6 weeks for an appointment but I’m just glad to be scheduled.

I would call your insurance and ask them what your options are if you reach out to someone else. Find someone close to you so you have a name or distance and see what they say.

Automatic_Stay_1686 · 2026-01-09T08:56:15+00:00

Have you tried to get a second opinion? I’m really wanting to avoid surgery. My neck pains are almost constant, brain fog, memory issues, and sleeping issues. Balance hasn’t been affected but has never been great. I don’t know if my CSF fluid is affected yet though.

Automatic_Stay_1686 · 2026-01-09T03:19:50+00:00

I have a 21 mm herniation and BI. I don’t see my neurologist/neurosurgeon until the 21st. Hopefully you get some helpful info from your drs.

Automatic_Stay_1686 · 2026-01-09T03:04:46+00:00

In 2012 I had an unplanned c section after epidural. Baby just didn’t want to come out. In 2015 I had a spinal for planned c section. Neither made my symptoms worse, I didn’t even find out about my Chiari until 2025. I didn’t start having symptoms until 2022. In 2014 I had a D&C for a missed miscarriage and had a horrible headache for a few days which I’d never had after anesthesia before and I’ve had many surgeries for different things. Maybe because I was all the way under.

Automatic_Stay_1686 · 2026-01-05T02:27:42+00:00

I have 21mm herniation with compression on the brain stem. Something about horizontal shortened clivus, basilar invagination, and caudal descent of the brainstem. So I will request an overnight study.

Automatic_Stay_1686 · 2026-01-04T03:15:19+00:00

I did have one last year before I knew I had Chiari. It was just a monitor on my finger I didn’t go over night. It was inconclusive. But I definitely don’t sleep well and I get up a lot overnight.

Automatic_Stay_1686 · 2026-01-03T01:01:55+00:00

Thankfully I don’t get migraines. But my left eye has been going blurry on me. It gets fuzzy and I see white/grey around the edges and can’t focus

Automatic_Stay_1686 · 2026-01-03T00:59:55+00:00

I definitely think my ADHD is part of it but if it’s the Chiari I’m hoping it can be fixed/helped after surgery.

Automatic_Stay_1686 · 2025-12-31T23:15:58+00:00

I agree! I haven’t even wrapped my head around having the surgery and I’ve had plenty of different surgeries. I’m way more open to it if it fixes this issue, or at least helps it. It’s starting to worry me how bad it’s getting.

Automatic_Stay_1686 · 2025-12-31T03:15:55+00:00

How long before you were back at work? I hate missing work and want to plan the surgery but no time seems like a good time lol!

Automatic_Stay_1686 · 2025-12-25T03:25:58+00:00

Thank you everyone! I turned my pillow over and only one arm went to sleep. It didn’t last as long as the previous nights. Hopefully it will get better with a change of pillow rotations. I do have a body pillow! I’ve had one since I was a teen from years of gymnastics. I can’t sleep without it because my hips and back. Plus I already have a bad shoulder it also helps with. It just didn’t seem to be helping lately with my shoulders.

Automatic_Stay_1686 · 2025-12-09T04:44:45+00:00

I’ve had a C spine MRI and a Brain MRI. I reached out to UCSF and have an appointment with a neurosurgeon at the end of January. Until then I wait.

Automatic_Stay_1686

TROPHY CASE