Hi there!
First, I am so glad that this group exists. I have been in such a weird place this past couple weeks, since reading my MRI report. I don't want to get into all of my history, as I am not really in a mental place right now where I wanna think about it. However, I do need some guidance/help or even just words of encouragement now.
In the process of getting tested for MS, my brain MRI said that my cerebellar tonsils are mildly low-lying slightly below the basion and opisthion. Borderline Chiari malformation is suspected. Under impression it says "Mild Chiari I Malformation". In an MRI of my cervical spine, I have 2 low grade disc bulges from C4-C6. In addition, I have reversal of the normal lordoctic curvature and a spondylotic change at C4-5. I also have a herniation of T9.
When I went into my neurologist's office to review the results, she explains that there is no sign of MS-thankfully. When I ask about the Chiari, bulges, and herniation, she says that none of them are an issue. That none of them are worthy of note. The Chiari is not more than 5mm (she doesn't know how big but definitely not more than 5mm) thus, it means that I do NOT have Chiari I Malformation and it could NOT be causing my symptoms. However, before going to the appointment I had done my research and had read multiple times that although the previous thought had been that under 5mm wasn't an issue, the new train of thought is that the size of the herniation does not matter. In fact, someone with a 20mm herniation may have no symptoms, while someone without a herniation may experience a plethora of symptoms. Although I was relieved to find out I didn't have MS, I left in tears because I still did not have an answer of why I was in pain or a treatment plan. In my eyes it was clear and objective--you could see the issues on the MRI's, it couldn't be denied that they exist. I couldn't understand how it didn't matter.
I already had an appointment scheduled with my previous NS to discuss the cervical spine issues (that MRI was done about 2 weeks prior to the others). So, now, when I go in to see him, we are going to discuss all of it. I know based on the website that at his practice they treat CM but do not know their opinions on it, nor how often he does surgery or what their treatment options are. I am so scared that he too will just blow it off like it is nothing. My symptoms fit EXACTLY to CM. I am loosing the ability to function at work and at home. They keep having to increase my depression/anxiety/sleep medications because I just keep getting worse--since I am in this horrible place of transition AGAIN (I have been here multiple times within the past 10-12 years). In the meantime, I have another 2 weeks till my appointment and am still suffering with the pain/headaches/vision issues and vertigo.
I keep reading everyone's posts and can't help but think every time..."that's me, that's my story". Everything on here hits home with me. It seems like a lot of you may have the same experience with doctors. I could really use your advise.
Thanks.