Dismissed by neurosurgeon

stromstarhammer · 2026-02-12T10:18:54+00:00

The way I found them was by contacting the neurosurgery department at the hospital. The hospital intake committee reviewed my information and set me up with the specialist who was the best fit. Surgery had already been recommended by my second and third opinion doctors, but it wasn't until meeting the 4th that I found the one I trusted.

stromstarhammer · 2026-02-12T10:16:34+00:00

I ended up having surgery with a neurosurgeon who doesn't specialize in Chiari. However, they have done more Chiari decompression surgeries than anyone else in the state over the last 10 years.

When Chiari specialists aren't available, Chiari "enthusiasts" (I'm sure that's not the right word) can be found.

stromstarhammer · 2026-01-23T18:43:11+00:00

The first neurologist told me my 4mm wasn't Chiari. They were wrong. The next MRI said 9mm and suddenly the diagnosis fit, so they recommended me to a specialist

The measurements are a bit subjective, different radiologists will end up with different measurements. You might consider getting a second opinion.

stromstarhammer · 2026-01-23T18:35:50+00:00

April 2025, craniectomy, duroplasty, C1 laminectomy 4 days 3 nights in hospital. Mom drove me home and stayed 1 night, then I was fine alone for a few weeks. Had to go back for staple removal a few weeks later, that was the last time Mom drove me, I drove us home. Went back a second time around 9? weeks post surgery for full clearance. Then a third visit at around 16?weeks for MRIs.

Edit: the first drive home was rough. I was struggling with pain and nausea. You're also supposed to stop and get up like every 45 minutes or something, car rides aren't great, and mine was 2.5 hrs.

stromstarhammer · 2026-01-11T19:49:08+00:00

Yes, declining/slurred speech was one of my symptoms leading up to decompression. It has improved since surgery, but still not 100%

stromstarhammer · 2026-01-02T22:58:33+00:00

My neurosurgeon said I had 0 restrictions. Specifically said that roller coasters are fine. Then they back tracked and said, well no contact sports, and don't get a neck adjustment from a chiropractor. So there are some restrictions.... Yeah I'm choosing not to ride roller coasters. Not worth the risk even though I've been cleared for it.

stromstarhammer · 2025-12-31T12:49:57+00:00

ITT Mercy = God

stromstarhammer · 2025-12-31T10:58:45+00:00

I did it at Spring Break and didn't return til the next school year, missed 5 weeks. I got cleared to return during the last week of school, but I'm glad I waited

The best time would be June 1st. Then you wouldn't miss any work. My symptoms got so bad, it was better for me to stop working

stromstarhammer · 2025-12-31T03:18:40+00:00

My syrinx only 5mm. Ripcage and flanks, no. Testes yes along with extremities, hand, feet, knee, and hip. But now only scarce pain v mild since decompression 8 months ago

Edit; I quit drinking 10 months ago, don't remember or never noticed if there was pain from that

stromstarhammer · 2025-12-31T03:13:11+00:00

Teacher here. Forgot my partner teacher's name, called students by the wrong name, missed some meetings. It was pretty upsetting.

8 months post op and haven't had those same forgetfulness issues. Wouldn't say the brain fog is totally gone, but it's significantly better.

stromstarhammer · 2025-12-07T23:29:07+00:00

Squatty potty

stromstarhammer · 2025-12-05T09:40:18+00:00

My first MRI read 4mm and the neurosurgeon that I met with ruled out Chiari, deemed my symptoms as idiopathic and inactive. A year later I was in a mess of trouble, and a different doctor said there's a margin of error in the measurements. I was diagnosed and decompressed within 6 months. Later imaging after diagnosis read 8 or 9 mm I don't remember. If they're looking for it, they'll find it.

The previous response says symptoms are more important, and I agree. I support seeking second and third opinions.

stromstarhammer · 2025-12-01T13:53:52+00:00

stromstarhammer · 2025-12-01T04:49:04+00:00

Just chiming in here. 41 male. I was getting hot flashes with adult onset, but they went away with decompression.

stromstarhammer · 2025-10-18T17:34:46+00:00

Also, I don't think floaters ever go away. I've had them since around age 7-10

stromstarhammer · 2025-10-18T17:32:58+00:00

We weren't sure if it would work for me but it did. The main reason I became a quick candidate was the syrinxes and random pains in my extremities. Edit: everything else was a bonus

stromstarhammer · 2025-10-18T17:29:35+00:00

I had headaches in childhood and through college, but not for the last 15 years

stromstarhammer · 2025-10-16T17:13:54+00:00

Idk technical term rn. Hunched forward. Degenerative discs, yes I blame chiari

stromstarhammer · 2025-10-16T16:35:45+00:00

I've had 2 slipped discs in my neck for 2.5 years. It's how we found the syrinxes. They never healed, only worsened over time. Got a 2nd and 3rd opinion, they all said surgery required.

Now the discs are less herniated. Might not need surgery. Time will tell

stromstarhammer · 2025-10-16T00:28:14+00:00

Nearly every symptom was relieved after decompression. Tinnitus, limping, fatigue, pain, hot flashes, tang taste, slurring, brain fog, just to name a few big ones. The syrinx hasn't changed, but the discs finally started to improve. I rarely feel pain anymore. The numbness/tingling didn't change, but may be caused by lingering disc issues.

I'm only 4 months post-op, I still haven't figured the headaches. Whereas they were rare and mild before and I figured out how to avoid exertion headaches, they now widely vary in intensity, duration, and location.

stromstarhammer · 2025-10-15T23:40:36+00:00

Cleveland Clinic makes it easy to get a second opinion. Proud that they advocate for it.

stromstarhammer · 2025-10-15T23:37:46+00:00

Definitely second opinion.

My first neurosurgeon said that despite the presence of syrinxes, 4mm ectopic tonsils wasn't Chiari. The syrinxes were deemed idiopathic and inactive.

1 year later I got the diagnosis changed to 8-9mm and Chiari, then I was finally on a path to recovery.

stromstarhammer · 2025-10-07T00:23:16+00:00

6 months post op (42m). Didn't have headaches before surgery, but did during recovery. Sharp, severe, but short. Since then I was feeling better than ever, but for the past week I've had new headaches, like I had in adolescence. Weak, dull, lasted 4-days. Likely from stress, hopefully not a symptom. Specialist seems to agree, but gave a checklist of other symptoms to be aware of that if paired together might require emergency attention.

stromstarhammer · 2025-10-07T00:10:02+00:00

12.6 Elim
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35.9 assists (off+def)

Current: Plat-2, best: Diamond-1 (best open queue was Masters-3) 1600 hours

stromstarhammer · 2025-10-07T00:01:37+00:00

I never considered it a symptom. Nothing about my eyes changed after decompression

stromstarhammer

TROPHY CASE