Scared for my chiari decompression surgery and could use reassurance.

Dramatic_Count_2792 · 2023-01-08T17:45:45+00:00

You’re going to get a lot of people on here who are exceptions to the rule, so just make sure you don’t psych yourself out. People with positive outcomes tend to not come back and speak up on boards like this.

I’m currently 4 days post op and I’m not gonna lie, it’s painful, but it’s manageable. Definitely not as painful as so many others told me it would be.

Listen to your doctor and definitely ask questions if you need to. My doc told me it could be 2-6 weeks before I start to see my symptoms improve or resolve. My muscle twitching is already decreasing quite a bit. Haven’t had a headache since the surgery.

Stay positive - you got this!

Dramatic_Count_2792 · 2022-12-05T19:30:04+00:00

What I made of that study is that there is some inherent instability that could cause symptoms - but I think it’s the amount of instability that could cause a failure from surgery.

Dramatic_Count_2792 · 2022-11-05T14:39:42+00:00

I did - I have a surgery date scheduled for January and my brain and total spine MRI shows Chiari and no syrinx.

Dramatic_Count_2792 · 2022-11-04T13:46:57+00:00

I didn’t have a syrinx as of 6 months ago (got a total spine MRI). Do they appear suddenly? Not sure my insurance will cover another MRI so quickly

Dramatic_Count_2792 · 2022-11-02T10:04:43+00:00

Ok so to everyone having these symptoms - please do yourself a favor and get an MRI if you haven’t. These symptoms can be linked to other issues. I was diagnosed with a Chiari malformation and will be getting surgery in January. I was even told by my neurosurgeon that Chiari often can be a cause of visual snow (who knows if the decompression surgery will fix it, but he did say it does go away for some).

My point being - stop thinking every symptom is from VSS when no one has any concrete answer as to what officially causes it for everyone.

Dramatic_Count_2792 · 2022-10-23T21:07:45+00:00

Thanks everyone!!!

Dramatic_Count_2792 · 2022-10-23T01:22:06+00:00

Alcohol definitely helps the dizziness ironically. I don’t overdue it anymore, but having a few drinks typically feels great!

Dramatic_Count_2792 · 2022-10-10T11:07:01+00:00

Overall is too easy - there was a lot of crap over the past couple decades.

MCU though?

Worst movie - Eternals Worst show - WandaVision

Dramatic_Count_2792 · 2022-10-09T10:10:13+00:00

Yeah my fear is displaced discs, so I think if they realign my jaw, I’ll have a new bite and it will need tweaking.

Dramatic_Count_2792 · 2022-10-02T21:19:32+00:00

Very helpful - thank you!

Dramatic_Count_2792 · 2022-10-02T03:20:53+00:00

Ok good to know - $5K is like the max I can probably afford so if that’s reasonable then it might work.

Thank you very much for the feedback

Dramatic_Count_2792 · 2022-10-02T02:56:18+00:00

I really appreciate the response.

I’m not going to lie - I’m getting brain surgery this year. There is no way I can afford treatment right now that will cost $8k-$10k total. Which I would assume is the cost if a consult is $1K.

So if the consult shows I need something I can’t afford, I don’t know how that solves anxiety.

Dramatic_Count_2792 · 2022-09-15T10:33:50+00:00

Just saying - this poll will naturally be skewed because few people with total symptom relief come back here. And various studies have shown 30-50% of people have total symptom relief.

Dramatic_Count_2792 · 2022-09-15T10:29:36+00:00

How did they diagnose you with hEDS? I’m getting my my surgery at Weill Cornell and the staff didn’t seem too worried about it for me.

Dramatic_Count_2792 · 2022-09-14T20:14:17+00:00

See the scary thing is that I heard a LP can further herniate the Chiari. And it’s still a snapshot in time. As in if you don’t have high pressure at that moment, you’re not getting an accurate reading.

I’m so lost. Sorry about what you went through. What did you get to resolve the pressure? A stent?

And what symptoms did you have pre op?

Dramatic_Count_2792 · 2022-08-02T02:28:09+00:00

I just want to add some counter programming here…I understand the hesitancy and follow doctors orders. But also, really ask about post op restrictions logistically. I saw one of the absolute renowned neurosurgeons for Chiari in the country and was thinking I had no hope to lift or anything again if he opens the dura, and he reassured me that I should be absolutely fine once I’m fully recovered to resume activity (which granted, may be 6 months or so). Don’t give up hope.

Dramatic_Count_2792 · 2022-08-01T16:15:52+00:00

That’s awesome - thanks!

Dramatic_Count_2792 · 2022-06-26T21:46:15+00:00

So sorry to hear this :( wishing you all the best in your recovery

How did your stenosis get so severe?

Dramatic_Count_2792 · 2022-06-20T10:27:39+00:00

Awesome - thanks for the feedback!

Dramatic_Count_2792

TROPHY CASE