So, a little backstory. I've kinda had minor cognitive issues, finding right word, foggy thinking, some memory issues, and depression for a year.
In September, my symptoms got dramatically worse. So, I went to a different doctor for a second opinion, and he recommended a neurologist appointment, and scheduled me an MRI.
The MRI comes back normal, except for a 5.6mm Chiari 1 Malformation. Upon researching that that was, I find out, essentially all my symptoms matched. So, I message him informing him that. He then recommends me to see a neurosurgeon. But, the appointment is 2 months later, and the Neurologist appointment, even further away.
By the time a get to the Neurosurgeon, my symptoms have continued to worsen, ringing in ears, fatigue, worsed migraines, further decline in thinking, memory, attention, appetite issues, weight loss, difficulty finding words, random pain in body, muscle twitching every now and again, nausea, dizziness, vertigo, clumsiness, etc. Coming into the appointment, they inform me that, essentially, I have too many symptoms for it to be Chiari. And that my 5.6mm herniation is borderline Chiari, and not big enough to cause symtpoms. They later look further and see it actually extends 6.3mm. They do a reflex test, everything below my wasit that they did was +3, and had clonus in my ankles. But, they happily order a Brain MRI with csf flow study.
So, another month later, and further worsening of symptoms, I get the MRI. Results were, my tonsills were now 7mm herinated.the csf flow anterior to the medulla, and between the medulla and cerebellum is normal. However, the csf blow posterior to the cerebellar hemispheres is minimal. And they tell me that,since there is only miminal flow posteriorally, but good flow in the rest of areas, it indicates there isnt severe depression. And explained that the decline in my memory, foggy thinking, and generally cognitive dysfunction wasn't a symptom of Chiari.
However, alot of what I've read about it online, and forums of what people who have it go through. Suggests that it is one of the symptoms? And them mentioning before it was herinated enough to cause issues. But watching lectures and articles on it suggests that small ones can cause severe symptoms, while large ones could be asymptomatic. So, I'm wanting to get a second opinion about it.
I don't know what to do, my Cognition continues to decline, I've got my whole life on hold rn, just sitting in bed all day. It was 2 months of waiting for the neurosurgeon appointment, another month of waiting for the mri, and now it'll be another 2 months till my Neurologist appointment.
There is a Chiari and Syringomyelia center an hour from my house. So, I've been considering going there to get advise from Specialists that are used to treating this condition. But, my current Neurosurgeon seemed pretty adamant that Chiari isn't responsible for my current issues. And it might seem a bit insulting to ignore her advice and go to someone else. Moreover, I'd probably need a referral from them to go to this next place, and have to try and figure out how to have my MRI pics sent there.
It's just, this is really debilating for me right now. I just want to get this all figured out so I can finally move on with my life. And having to wait months between doctor appointments is frustrating. It's going to be 2 months of sitting and waiting for my next appointment, while I'm sure it'll take more months of waiting for future appointments after that. I'm tired of living like this, and I'm not sure how much longer I'm willing to put up with it.
I've spent around 2 hours just trying to write this post. I get migraines every other day, which pain meds hardly help anymore, back and neck pain, tinnitus, blurry vision, excessive sleepiness, fatigue, weakness in arms, dizziness, vertigo, palpations, clumsiness, weakness, muscle twitching, aphasia( I think, when I can't remember a word, I'll substitute it with something similar), decline in concentration, slowed thinking/processing (sometimes while reading or listening, I dont process it at all), most of the time, my mind feels blank, or have trouble even thinking, or more so, the inability to think. My memory has declined so bad, I'll forget what the conversation is about mid-sentence, or a thought, I'll forget words, their meaning, at one point, I forgot the day or the week. Or more embarrassing, we carpooled to a friends house an hour away and I asked the friend whom's house we drove to, (so he wasn't with us when we carpooled there), what time he got to our town to carpool. If that sounds confusing, it's cause I'm also struggling to explain things. I literally feel like my IQ has dropped by 35 points. At some points, I randomly get super irritated by anything, arms will feel heavy, and I'll just feel like falling over and passing out, or wanting to chuck something.
Idk, I think I forgot what I originally posted this for, and ended up venting more than anything. I just don't know what to do, I hate having to wait months between appointments, and still not knowing for sure if the Chiari is responsible. I wonder if it's just a coincidence that as my smyptoms have gotten worse, so has my tonsill herniation? Does anyone else have similar symptoms? Or is it like my Neurosurgeon stated, that I have too many symptoms for it to be chiari? Sorry for the long read, would've summed it up if I could.