Just been informed that I have Chiari 1 malformation after an MRI to r/o brain tumor based on my symptoms and family history. Over the past 6 months my symptoms have become worse and am wondering if that is typical of Chiari 1 malformation in adults. I am 34 years old. How bad do symptoms have to get before they decide you are a candidate for surgery. Having Chiari 1 is pretty scary but the surgical treatment also sounds pretty scary!!! Will be meeting with a neurologist within the next few months.
Everyone seems to have a different experience. Some never progress and never need surgery and others keep getting worse. Especially if a syrinx is involved. I would recommend you actually see a neurosurgeon. This does not mean you will need surgery, it's only that most neurologists seem to be clueless on Chiari. Most people on the boards were told by NL that Chiari didn't cause their symptoms when in fact it did. So press to see a neurosurgeon! They should order a CINE MRI to make sure your spinal fluid isn't blocked and this helps them determine if you are a surgical case.
I had the surgery and though it sounds terrifying it's really not that bad! :)
I totally agree with Anglyn, I would have saved myself so much trouble and pain by going directly to the surgeon like friends in the medical told me to do, I’m having my surgery in two weeks and yes I’m scared but the NS I picked actually specializes in Chiari and he said if drs aren’t educated on it they will ignore the chiari and when you have the symptoms they will almost always recommend surgery. Best wishes!!
Hi..
I too, agree with the gals who replied before I did....if I had to do it all over again ...now this is just me...I would have by-passed the NL's and gone straight to the NS.
Let us know how you are making out!
The primary care provider referred the neurologist and she didn't seem to think it was an urgent matter. My symptoms seem to come and go but am worried that they will worsen with time.
ChiariPT said:
I never saw a neurlogist either. I have seen 2 neurosurgeons. Have the primary care physicians been the one to refer to the neurologist first?
I am new here and am also 34 years old. I went to the hospital (Nov. 2012) after having my very first occular migraine and daily constant headaches afterwards. They were concerned that I had a stroke or a brain tumour, so they kept me overnight to do a whole bunch of tests. After my first exams they said that the area by my cerebellum seemed "full", and after the MRI they said that my cerebellum was pressing on my spinal cord and that it was Chiari. I have been following up with my regular doctor, and have had 2 MRI's since then. I have daily headaches and migraines ever since, my balance is definatly off, I'm exhausted all the time. I don't know where this is all going to lead. My doc just says that we are going to "take it one step at a time". She says that they don't usually do surgery for Chiari unless there are major symptoms. If you need to vent to someone who is where you are, you can reach me through here. I'm lost right now, adjusting to this new pain and worry. You are definatly not alone!