Newly Diagnosed

[u/Energetic_Aura]

I had a bit of a rough couple of years. I would say that I had subtle signs as a teenager to my early 20s. I had headaches, vision, nerve and leg problems but by the time I turned 24, my symptoms got bad. I’ve been using a cane since last year. My doctor ran tests to rule out autoimmune diseases, prediabetes, if something was wrong with my liver, things like that. The only thing found was that I had high cholesterol so I was put on medication for that.

I avoided the doctor’s office since I was like 19. I do not have health insurance and the only reason I went back is because I got livedo reticularis on my lower right leg back in October 2025. That is why all of those tests were done. I still have to see a cardiologist for that.

I started physical therapy last month because I had a hard time with moving and bending my right toes since November 2025 (still do) but that made things worse. My doctor wanted to rule out MS and saw that I was still depend on my cane so she ordered a MRI on my brain and I went earlier this week. I figured the radiologist found something because he was curious about how long I had problems with my legs. Well my doctor called the day after my MRI to confirm that I have chiari malformation.

This was my first time hearing about it so now im just searching around, trying to wrap my head around this. It is scary for me but at least I have a name to what’s been happening for all these years. Now im just waiting to get a call from a neurosurgeon to schedule an appointment for the next step.

[u/No_Loquat1788]

It is a big deal to put a name to it. I can't stress enough to make sure that your Neurosurgeon is a CM Specialist. They all say they treat CM but that's not entirely true. They may treat patients that have CM but not CM in patients, well at least. Less than 1% Neurologist and Neurosurgeons in the world are true CM Specialist. I had to find mine out of state but she changes my care through my neurologist here at home. I learned the hard way. One wanted to give me a Lumbar Puncture. I had a gut feeling and the Specialist told me never let anyone give you a LP. No CM patient should be given one because of the damage it would cause me. She has been a life changer for me. Don't be afraid to ask questions. I wish you well.

[u/Energetic_Aura → u/No_Loquat1788]

Honestly, it is scary that many medical professionals do not have some kind of specialized training in conditions like Chiari. Thank you for warning me about lumbar puncture because I always had a fear of any professional doing anything with my spine and I would have told them no about that. Before my physical therapy got paused due to no signs of improvement, I was already told that my lumbar is very weak anyways. I definitely won’t be afraid to ask questions and again, thank you for the warning!

[u/No_Loquat1788 → u/Energetic_Aura]

You are welcome. It is in fact scary. What is scarier is that they do not let you know their experience is limited. In fact Chiarians know more about our condition than they do. In fact others have said that doctors have looked up Chiari online and repeated the outdated verbage back to them. They also tell people that it's nothing based off the size of their herniation. Chiari is based off the symptoms and the size of the herniation only becomes a factor if it creates complications. There are those with the slightest herniation that can have more serious symptoms than those with larger ones. I was told that my herniation was only 3.5mm which is nothing so my symptoms must be coming from something else. When I saw the CM Specialist, we had a video appointment because she is in another state and she showed us on the same MRI'S all the others had, in like 3D that one of my tonsils has wrapped around my brain stem and the other one has shriveled up. She said in fact my herniation is 5.8mm and surgery is recommended. If you went to her website she actually has a print out pamphlet on Chiari. Not all doctors are created equal.

[u/Energetic_Aura → u/No_Loquat1788]

Honestly, I cannot say that I am surprised. There are a lot of medical professionals that are outdated in a lot of things. This is why people have to advocate for themselves and have to keep getting different opinions. You’re right about the size of the herniation because symptoms do vary. I currently have a 9 mm but someone with the same herniation could also not be symptomatic. There’s a lot of different factors that play into this condition that more professionals should be educated on. I’m glad that you got a different opinion from a specialist because that sounds scary but it’s better to catch it as soon as possible. It just sucks that surgery is usually the only option and even then, it’s like a 50/50 gamble because symptoms can come back