So on May 8th, I had my follow up appt with my neurologist. My neurologist gave me the results from my MRI and stated that I in fact do have a Chiari Malformation Type 1. By the symptoms I had been having, I almost knew that's what it was but to hear the words confirmed that I really wasn't crazy! The next step was to determine how to move forward in treatment. He informed me that there were 2 ways I could go at this point and it would be based on how much this is a factor in my every day life. He said we could either try meds at first to manage the symptoms or surgery but at this point he wouldn't recommend surgery due to the recovery and what the surgery consists of. So while these symptoms are pretty annoying and irritating, personally at this time, I do not think they warrant surgery. So we trying Topamax to help with the headaches since this is my number 1 complaint. I have a follow up appt in Sept to see how this is working for me and we will go from there. A referral to a neurosurgeon will come when we deem it needed to look at surgery. So here is to hoping that the Topamax helps relieve some of these symptoms!
No I have not had that done yet, although I will call my dr’s office and see what I can do to have that done. Thank you for the info!!!
Tacara:
I'm kinda in the same place. I was diagnosed April 24th with Chiari Malformation 1 and a large Syringomyelia. My neuro asked me the same thing, can you live with the daily symptoms? At this point, I will. My Chiari doesn't seem to be as severe as some other Chiarians. The neuro did ask me to follow up with a brain MRI and another cervical MRI but this time with contrast. Once I get these done I will go back to him to see how to proceed. Right now I'm just taking daily precautions and protecting myself as much as I can.
Good luck to you, and keep us updated.
Shawna
I am also new to the Chiari diagnosis. I do not want to have surgery if I can help it. I am hoping to find relief in some other ways. Let me know, if you can, how the Topomax works for you! I'm seeing a Neurosurgeon for the 1st time on Monday. I guess I am in the "wait and see" time period. I have been going to acupuncture 2-3 times a week and had a bilateral occipital nerve block done a few days ago. They are trying to find out if the Chiari is the cause of my daily migraines and headaches or if it could mabye be Occipital Neuralgia. What are your other symptoms? Just curious. Good luck on your quest!!
Good luck with the Topomax!