I need opinions!

Newly diagnosed with Chiari Malformation Type 1. 5-6mm herniation more on the right side. Was told I’m borderline and not to worry.
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My thinking is are u suffering from Chiari symptoms and how well can you handle them…

I get minor symptoms. Headaches mostly on the right side or at the base of my neck which are relieved with ibuprofen, neck pain, dizziness, brain fog, brain zaps, hiccups when drinking carbonated pop sometimes, light sensitivity sometimes and anxiety. When my anxiety is high my symptoms flare up. I can go months without symptoms.

If you have the symptoms you have Chiari!!! Get a CFS flow study and that will show if you have a blockage!!!We were screwed around for 6 months by 2 different neuro surgeons and the surgery corrected the problem!!!

My sons blockage was worse than the MRI's showed!!!

I don’t have issues passing out or anything. Can I still have blockage? I really don’t want the surgery in fear it’ll make things worse and complications will arise.

My son had headaches and facial pain that was unbearable ! The CFS flow study is a 15 minute MRI insist on this MRI!

My son actually had an adhesion at the T-1 level that cause the blockage and his MRI's were not persuasive enough for surgery But the blockage was. He had neck trauma 4 months before getting his blockage and the injury caused the soft tissue damage that led to the Chiari! The soft tissue ie muscles and ligaments were stretched or compromised and led to the blockage!

Yours sounds a lot like mine I went 3 years with symptoms like yours before I started falling and my arms and legs falling asleep on me for the most part I just took meds to get my headaches under control. I finally had surgery in November and had 3 glorious month of feeling normal. Then my migraines came back and I'm no seeing a new neurologist for that. But saying all of that everyone is different and do suggest having a doctor who know what Chiari really is it makes a big difference. Since my surgery the migraines are the only thing back and I feel good most of the time.

I am seeing a Neurosurgeon on Tuesday and one of his specialties is Chiari. I’m very scared and nervous as I do not want the surgery at all. I do not think my symptoms are bad enough nor do I think they will get worse. I think surgery could actually make it worse.

Aimee I understand the craziness this all brings to you. My neurosurgeon said that only 20% of pts with Chiari actually need surgery. Unfortunately I needed to have it and knew so. I am 1 week post op and it is much more difficult than I anticipated. If you are able to tolerate your symptoms and you have good CSF flow, I would rush for decompression. It is important to have an MRI with flow study and to work with neurologists and neurosurgeons familiar with Chiari.

Jen, you would or wouldn’t rush for decompression?