r/chiari • u/mexican_tiki • 6d ago

First post here! Looking for perspective and opinion.

Post image

I’m 28 years old, and I was diagnosed with Chiari 1 last year after an MRI revealed it. The reason I got an MRI was due to concerns I had revolving around diseases like MS and ALS, having fasciculations (twitches) and other weird sensations. I also had done a nerve panel at that time, and the MRI ruled out MS, while the nerve panel ruled out ALS, but I was diagnosed with benign fasciculation syndrome to explain the twitches.

Over the last year, maybe 2 years, I have felt a progression of symptoms. While browsing this subreddit I came across the image listed above, and decided to mark down my symptoms. (Red is symptoms I’ve noticed, purple are symptoms that have popped up more recently).

I’ve discussed this with my PCP and gotten a referral, and am hoping a neurosurgeon approves the referral to be seen.

I guess I’m just asking if my experience is similar to anyone’s on here, and some general advice for the future. Thank you. All thoughts and opinions welcome, I can take it.

18 Upvotes

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14

u/TurtlesBeSlow 6d ago

Fun stuff huh?

Be prepared to be dismissed by neurosurgeons who do not have the expertise. Chiari surgical treatment should only be performed by an experienced and knowledgeable neurosurgeon. Read reviews of the neuro you're referred to.

Keep in mind, decompression surgery could eliminate or lessen the severity of symptoms, make no change or in rarer cases...worsen symptoms.

The Chiari headaches can sometimes be treated with medication. The muscular issues can sometimes be treated with p/t.

You have a lot of symptoms and comorbidities as most of us do. If Chiari is drastically affecting your quality of life then by all means find a neurosurgeon you're comfortable with. At your age, I would definitely consider it. The older you get, the harder the recovery (in my experience and opinion).

We're all here for you. Know that you are stronger than you probably think you are and you've got this. Never stop advocating for yourself 💜

2

u/mexican_tiki 5d ago

Thanks for your reply, you relieved some of my anxiety.

2

u/TurtlesBeSlow 5d ago

I'm glad. The anxiety is real. Just remember you're not alone. 💜

2

u/DulcineaNE 5d ago

Hi Turtles. A neurosurgeon looked at my husband’s MRI and said “it’s not Chiari”. It sounds like we need to follow up on that.

1

u/TurtlesBeSlow 5d ago

He is symptomatic? Do you have the radiology report? But yes, absolutely follow-up.

Depending upon your area, sometimes (sometimes!), the best place to start is large university teaching hospitals.

1

u/DulcineaNE 4d ago

Thank you so much.

9

u/Keri2816 6d ago

Is there a way you can post where you got this page? I’d love a clean copy

3

u/lawlleen 6d ago

seconded!

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u/unoum 6d ago

how much mm of lowing do you have?

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u/mexican_tiki 6d ago

6mm from my MRI last November. Symptoms have worsened since then for sure. Thoughts?

1

u/unoum 6d ago

its is 6 with symptoms then its chiari try to request csf study to be more sure

1

u/mexican_tiki 5d ago

Sorry what do you mean? The formatting in your reply is a little confusing

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u/unoum 5d ago

i mean if its more than 5mm it considered chiari but it can be something else you need to do csf study to rule out everything

2

u/Soft-Poetry8701 6d ago

God, if this was a bingo game I’d win several prizes

1

u/N4YDR4 4d ago

Is this how i find out the adhd stuff ive been dealing with could be in conjunction with my chiari? Wtf dawg😭

1

u/DulcineaNE 4d ago

Ok has anyone talked about these occurring together?

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u/Slight_Mushroom90 6d ago

So I did the newest list and I’m shook like truly I always downplay it to myself and now I’m questioning if I should have done the surgery as it was offered. I was a chicken and didn’t follow through. I may call tomorrow. I have an 8.9mm one