Hello!!
I am so very grateful for finding this site, and all of you! I feel kinda lost! Here is my story. After I recovered from the stomach flu (pretty bad, 9 hrs of vommiting); a few days later I started ro experience a pretty constant state of dizziness. I thought it was dehydration. This continues, will come in waves, some days all day/part of the day, ae days not at all.After seeing my dr, and ENT- I finally saw a neuro. He was not even going to do an MRI, but i asked for one. He feels my waves of dizziness is a phobia induced vertigo, basically anxiety. MRI was fine except accidental finding of a 2 mm right tonsillar ectopia in the cerebralcervical junction. I was clueless as to what he was talking about, but thought this must be a reason to my dizziness issues. He feels confident it’s not related. This concerned me because a lot of what i am reading says it’s a symptom.
This has been my only issue, besides neck discomfort. I made an appt with a neurosurgeon, bc i read that they know more about it. I emailed my current neuro asking for a CSF MRI to be done, so hopefully I can get that done as well. Are waves of dizziness, a only symptom, common with CM? What should be my next step from here?
Also, was anyone told to have limitations on excercise? My neuro encouraged me to keep jogging. I was previously training for a 5k in the spring 
but I am scared now because of the pounding from running. I don’t normally experience headaches.
I am so sorry I feel like I have a million questions. Anyone in the Buffalo NY area with good Dr recommendations? Thank you!!
Welcome! Sounds like you're heading in the right direction. The CSF MRI is also referred to a CINE MRI. I just had one done for the same reason. Neurosurgeon said I had Hoffmann sign which of course I had know idea what that was. It's a sign that your cord could be compressed. So naturally I figured if my cord might be compromised maybe the fluid was as well. I tried twice to get my Neurologist to order it and she wouldn't so I fired her and I'm working just with my PCP and a pain Doc for now. There is a list of Doctors recommended by people with Chiari. Luckily you are in a good place as there are many Chiari experts on the East Coast. Not so many on the West. :( Anxiety does come along with Chiari but it doesn't cause how you're feeling. I just fought one off awhile ago and I haven't had one in years (anxiety attack). You will find with Chiari our symptoms can vary from person to person. On exercise I would listen to your body. You know it better than anyone else. If running makes you feel worse, I wouldn't do it. I have found that I usually pay for my action later on or even the next day. The dizziness is a symptom of Chiari and some of us faint. If you are in shape and don't want to lose that (which I'm not anymore and am disgusted with myself) I would try something that maybe isn't so jarring? I know part of the problem is when you get the blood pumping it just seems to make the headache worse. I was thinking maybe swimming laps or an elliptical? By who am I to say, I have an elliptical, I know bad, bad! ;) I really like the website conquerchiari.org. A friend recommended it to me when I first became diagnosed and I like how straightforward it is. It also does a great job with how we all vary with our symptoms. Next step for you will probably be some type of medication to block the pain or help with the symptoms. There is on a resource section help for preparing to see a neurosurgeon that way you're prepared, I didn't do it and I wish I had. I had heard how great he was so I figured I would go in and he would tell me what's wrong. It wasn't even him that diagnosed me it was my pain Doc. I've now diagnosed my daughter because they can't or won't read MRI's in Washington State. It sounds like you should find a Neurosurgeon who specializes is Chiari. My neurologist was from Minnesota where I believe Chiari is better known then here but she won't acknowledge it because it was also over diagnosed and neurosurgeons were doing surgeries on people they shouldn't have. So apparently her take is to not diagnose it at all? I would do some researching on your own. Some people have to go through quite a few Doctors until they find one that will work with them.. Don't ever feel bad about asking questions. It is so overwhelming when you are diagnosed. We are here to answer questions, to let you vent, everything or anything we can do. Know you are not alone in this and let us know if any other questions come up. Also if you keep your appointment with the Neurosurgeon let us know how that goes too. Good luck to you!
Sarah
Welcome, Nic!
Dizziness is one of the many symptoms of Chiari (and one that I definitely have). It's good that you are going back to a NS for further info. There is a list of recommended doctors by state in the Doctors tab above. It is helpful to see someone with Chiari experience.
Donna
Yay! I’m not the newest newbie anymore! You’re going to LOVE this site, trust me. I’ve learned more I. A few days than I have in weeks of research! That being said, I agree with the others-- dizziness with chiari is normal. My neurologist (NL) told me it’s unrelated as well. In fact, he told me that chiari malformations don’t cause ANYTHING, and that they are merely cosmetic in nature. It seems NLs don’t know much about Chiaris and what they do know is largely WRONG. Listen to your body- do you get a pounding g pressure when you run? I know I do. Walking is somewhat better, maybe you could stick to that for awhile? I used to love to dance, and while I’ve gotten migraines my whole life they didn’t get so bad as to hold me down until the past year and a half or so. Now, any blood-pumping exercises leaves me dizzy and gives me a horrid headache. Resting frequently and keeping my head above my heart at all times helps a little— maybe you could try that? I hope you get some relief soon!
I am in the Buffalo area. My NS is Dr Kevin Gibbons at UB. I have only seen him once. I did like him. I did meet someone who had their decompression done by him and they said he did a great job. I go for my 2nd appt with him on Monday. I know a couple other Chiarians in the area go to Dr Leonardo also with UB Neurosurgery. And yes, I also have some dizziness. Good luck to you.
Thank you sooo much! I have an appt with Dr… leonardo on the 12th! And I was thinking of seein Gibbons. Do you know if one is better than the other by chance? Thank you!!