Have an appt with neurologist on the 6h which I’m
Learning via reading may not even be that helpful If he’s not a Chiari specialist. In the meantime, my curiosity got the best of me and I attempted to read my MRI report. Maybe I shouldn’t have but my symptoms seem to worsen daily and I couldn’t help but try to make sense of it.
Ok, I thought maybe I should try to explain a little more since I've had no response. My MRI report states that I have Chiari Malformation Type 1 with mild crowding above C1? Has anyone heard this phrase before? My MRI only visualized to C5 but there was no sign of a syrinx according to the report. Can they form below C5? I'm sorry if I sound uneducated in this. I'm newly diagnosed and just learning. My symptoms are severe headaches, almost constant prickly tingling/numbness in my toes (and sometimes they get very hot), burning eyes, pinching pain between shoulder blades, numb, heavy feeling arms, nausea (especially in a vehicle), extreme short term memory loss and difficulty forming sentences (that's most of them). This all started about 3 months ago and they have worsened severely in the last two weeks.
Hi Nichole.
I am new to this as well so wont be much help, but I did just want to let you know that I have alot of the same symptoms. I was diagonosed in April of this year and I have a 2mm herniation plus a small benign tumor in the same area. My sypmtoms I am learning are worse depending on what I do with my body daily or sometimes dependant on the weather. I am in the process of trying to find a good surgeon who could do this surgery in his sleep....nervous and scared, but know its inevitable. I go for my second opinion next week with the surgeon. The first one said he would definately recommend surgery....we shall see. I hope you get some answers and good luck with your appointment on the 6th...hang in there!
Hi MJ,
I wish you luck with your second opinion next week! The surgery sounds very scary to me and I'm hoping I can avoid that. I was lucky enough that the random doctor I saw one day for my headaches took it serious enough to schedule an MRI right away but I was quite shocked when I heard the result. I live in the twin cities in MN, not too far from the Mayo Clinic so I'm going to attempt to get in to see someone there after my appointment with the neurologist. How did you come about finding the right surgeons to get opinions from?
I never thought about weather having an impact on my symptoms. The weather changes here in a heartbeat. I wonder if that's why it's been worse lately. Lots of storm systems. Guess is something to think about....
Thanks so much for your input and encouragement. I truly appreciate it.
My MRI report stated that I have mild crowding as well, which thus far in my journey, has made the neurologists not take it so seriously. I hope the best for you and that you have a doctor that does.
I just started researching. I did get a few names off of a list that they have here on this website....go up to the top and click on doctors...if you go to the second page one of the threads has a list of chiari doctors..good luck!
Thanks, MJ!
Annie, how long have you been daling with the symptoms?
I have them for a little over a year now, slowly stacking up as time goes on. I haven't had very good luck with Doctors taking the Chiari part seriously. They've treated it as Chronic Migraines, chronic sinus infection, random vertigo causing anxiety attacks - Nobody I've seen yet has actually associated it with the Chiari. Apparently they think the Irony fairy has just been playing tricks on my all this time!
Annie, have you seen anyone who specializes in Chiari? I am always shocked when I hear someone with classic symptoms being told they are unrelated.
Not yet. I should have a referral in the works finally. You know how it goes though, they've been jerking me around for months now. Any time I go in I get a "well I don't know what's causing it, but I don't think it's the Chiari" .. nobody has really been taking my case seriously so far, so I am hoping that this next doctor does.