Confused

Welcome Greetings and Introductions
1

I hope I’m doing this right. Hi everyone :slight_smile: I’m so incredibly confused. I was diagnosed end of summer with Trigeminal Neuralgia. That took a good year, to get. I scheduled an appointment 2/26 with a neurosurgeon re:possible MVD surgery to correct the problem and relieve my symptoms- which are becoming more and more unbearable. The surgeon requested my MRI disc, which I picked up. Yesterday, I was going through the report included with the disc, and right there- plain as day, it lists Chiari 1 Malformation Tyoe 1. I’m so upset- because my chart has been in the hands of 3 different neurologists with that practice, and not one of them chose to enlighten me re: this “finding.”

DO I have TN, or NOT?
Every single symptoms I’ve been experiencing since birth (scholiosis, brain fog, memory/concentration issues) can be linked to this, according to my research. Why would the docs be so quick to DX “TN,” when it’s right here in black and white, that I have CM?
I feel like every doc is a quack, now. I want/NEED to be able to rest my brain and trust that the specialists know what they’re doing. My brain just doesn’t work the way it used to. It takes me literally hours to comprehend what I’m reading.

I’m so glad I found that report, and it let me here. Thank you to anyone who can offer any comments in advance. Marsha.

2

Hi Marsha, you may like to use the search box at the top right of the screen to see if TN has been discussed here before. What I would say, though, is that Chiari malformation is actually common but the majority of people go through their whole lives not knowing they have it and asymptomatic. It is very often found, as in your case, during investigations for something else. That's not to say your Chiari or TN (or a whole host of other things) are/aren't the cause of your symptoms or not. But it's all information that adds to the things you need to be discussing with your surgeon. I've just checked and can't see that you've applied to our TN community, I'd recommend that you do because there are some incredibly knowledgeable people there. Put in your application that you were recommended by Mod/ModSupport JulesG. I'll look out for you but this will speed things up if another mod over there sees your application first. Here is the link to the TN community. Oh, and use the same user name ... keeps it simple for us mods. JulesG