u/Energetic_Aura

So I finally got the chance to see the neurologist and I felt uncomfortable. It was fine at first but as minutes passed, he looked at me like I was lying because there are some symptoms that are not “typical” of chiari. Y’all, it was so hard to remember everything from the top of my head and I know how disorganized that I get. He just kept asking question after question when im still trying to explain from the last question he asked and I couldn’t understand what was being asked for the next question. When I happen to not bring up a symptom from my logs in the middle of thinking and explaining, he would point that out like im sorry, excuse me for having all of these symptoms that are so hard to keep track of. He was asking me how come I didn’t report these symptoms before and why didn’t I get a referral to a neurologist before. I’ve tried that but they all said that I needed a referral from a primary doctor and I didn’t have insurance then, still don’t. It was the most stressful hour and an half of my life. It’s like he was saying, “if you were having all of these symptoms, how come you didn’t do something about it years ago?” In my family, nerve problems are common (just not at my age) but I didn’t even have the chance to explain that.

He asked me to lift my right leg/knee up and I couldn’t lift it up high enough. I can’t recall exactly what he said, something like if I can get myself out of the car, I can lift my leg/knee and to try again, same thing happened and he asked if that was the highest that it could go. Mind yall, I have a weak lumbar, among other things, and walk with a cane. It’s like whenever medical professionals hear that you got help with organizing your symptoms by uploading YOUR OWN DAILY LOGS using AI (yes I know that tech like that is not good but I suck at being organized), it’s like they tune you out and side eye you when you’re just trying to make them aware just in case you report any new symptoms. At the end of the day, they are not living in my body to know what I experience from the time that I wake up to the time I go to bed. The only people that have been on my side were the ones that did my MRIs for the most part. They believed me but not my PCP and now the neurologist. Some people in the medical field are just so blinded by my age (im in my mid 20s) that they have this problem of doubting me. I live with the burning and vibrating in my spine, not being able to move my right toes for nearly a year and now my left toes are following behind, shortness of breath when just taking a few steps and having to take breaks to sit down, using a bath bench just in case one of my knees buckles, having to take a shower once every 2-3 days because my body has to recover from the one shower that I took, and that’s just the half of it. I keep pushing but they push back harder, making it seem like im fine and im exhausted at this point.

The last time I posted on here, I talked about getting my diagnosis. Well, I saw the NP of the neurosurgeon in the middle of last month and everyone was so sweet. Call this intuition but I’ve been keeping track of my symptoms since 2020 (had problems with my hands at that time) to now in 2026. They said that it was a good thing that I did that.

During the visit, she basically said that I have symptoms that aren’t typical of Chiari and is curious to know what my neurologist is going to say. She also said that she didn’t think that I needed surgery right now but just to be sure, she ordered a cine flow MRI. I appreciate that she did this.

Well I got my results back on the same day that I got the MRI. It took a few days to come to terms with it but basically, the narrow canal called the aqueduct is nearly closed shut and there is no flow behind the herniation (meaning it is blocking the fluid from moving into my spinal cord).

I was frustrated because I literally gave a timeline of my symptoms and the new symptoms to my PCP like a week after seeing the NP and she didn’t even bother to throughly read it. I was labeled as stable, that I did not have any daily limitations but my MRI a week after the PCP visit proved that she was wrong. All she had to do was throughly read what I was trying to tell her because I was experiencing really concerning symptoms and wanted to let her know. After getting those results, I told myself that I was done with her because this is a serious condition and I shouldn’t have to keep going to her to get a single referral so I have a new doctor but I have to wait until June. Until then, im seeing the neurologist for the first time next week. I only kept going back to her because that clinic was all I could afford with a sliding fee.

I think the really frustrating part is being told by my PCP to move my foot back to the front in the same visit that I gave her the documents of my symptoms. One of my feet turns outward but when I stop walking and turn it forward, it just turns back outward when I start walking. I literally can’t help it but apparently my shortness of breath and having to walk slow so my knees don’t buckle is not enough. I also notice that I stand with my knees slightly bent. I’ve been using a cane daily since last year (it’ll be a year in a few months) and have a bath bench too yet im stable and have no daily limitations, crazy right?

Before that, I had to keep going back to her until she even referred me to a physical therapist, cardiologist, and a neurologist. This is why I always tell people that it is so important to document what you can, always bring a medical folder to every appointment and don’t be afraid to speak up. If you don’t feel heard, if you can, go to someone else that will listen to you. We deserve to be heard.