My name is Jess and I am a 23 yo living in the Midwest. I have had chiari-like symptoms since I was 17 yo. Mine include: head/neck/shoulder aches, especially upon exertion, foggy memory, extreme lethargy on the daily, often trouble with word finding, facial numbness upon exertion, nausea, lightheadedness … I feel like the list goes on and on. The first MRI I had done, the report was normal but mentioned “mildly low lying cerebral tonsils”. I didn’t know what that meant. So I continued to see my neurologist for pain management as they told me it was migraines. They prescribed me multiple medications but nothing has helped.
Recently my symptoms have gotten progressively worse, particularly the headaches and lethargy. I have a headache almost every day. They’ve gotten so bad that I’ve been to the emergency room 3 times in the past 9 months because I was throwing up and my headache is unbearable. Finally, I sent my MRI to Dr Dan Heffez at the Wisconsin Chiari Center in Milwaukee, and shortly after I had an appointment with him. He was the first doctor to diagnose me and agreed that despite my chiari only being 5mm, it was still likely causing my symptoms. He ordered me to wear a cervical collar for 2 weeks to rule out neck instability before any invasive approaches, but said that he believed the decompression surgery would be beneficial to me. He was so thorough and spent over an hour in the room with me explaining everything and doing an in-depth neuro exam. I thought he was awesome.
Which is great! It was finally the first time I was given an answer to why I feel like this and it was overwhelming. But I am still terrified. So I decided to get a second opinion… it wasn’t from a chiari specialist, but another neurosurgeon. She said she didn’t think I even had a chiari and was baffled he even offered surgery (and openly laughed at what Dr Heffez said, which kind of made her lose any credibility to me).
To say the least, I am more confused than I was before I seen either of them. I have almost all the normal symptoms and what Dr Heffez has said to me all makes sense, but I still don’t know what to do. I’m worried I am just taking what Dr Heffez has told me as fact because it’s what I want to hear, that there are finally answers behind this madness. I want to feel better and live my life again, but I also don’t want to have an unnecessary brain surgery and then not even feel better.
Any suggestions? Anyone’s experience similar?