I’m so glad I found this site- I hope I’ll be able to find people I can relate to. Not too many people in Small Town, America even know what a chiari is, let alone how to answer my questions! Even the neurologist that I’ve seen twice now doesn’t seem to know a lot about it… He told me outright that he does NOT believe my chiari has caused ANY symptoms in my life. To quote him “It’s no different than if you had a mole on your nose. Chiari Malformations don’t really do anything to the people who have them.” I know that’s hogwash, right? He also kept pushing Topamax at me, even though after nearly a month on it, I had no relief and was experiencing horrid side affects. He flat out told me he would not authorize me to discontinue it. I did anyway… And I’ve felt so much better (daily migraines aside.)! Should I trust this guy? I feel like he doesn’t answer my questions, and he just assures me that the pills will fix me. I was sleeping 18+ hours every day, and had terrible nightmares, and still had migraines despite the pills. I also couldn’t eat, couldn’t focus, and began to experience serious memory problems. My neurologist listened to none of this. He’s sending me to a neurosurgeon at OU at my request, but told me not to trust them! What is up with this guy?
I would definitely not trust this guy! You should really see a neurosurgeon, or at least find a different neurologist that isn't a complete jag off. I'm so sorry that you have been going through this with a doctor who doesn't listen. I'm so glad you found this site too! Everyone here is wonderful, and it is so nice to know that there are people out there that are going through the same things and you are not alone!
Thanks so much! My instincts say this guy is a quack, but it’s hard to not trust a doctor for me— but I will be pushing hard for the NS. An appt was supposed to be made, but its been nearly a month and it seems like no one in Dr. Villazon’s office (he’s the quack) has lifted a finger to do it. He wants another MRI to check for Syringomyelia, but he told me even if I do have that it’s no biggie and we won’t do anything for it.
Change dr ASAP!!! But nl is finding one your comfy with but generally a nl isn’t the dr for a chairian and its just not a match made in heaven ballpark not perfect fit so just smile and educate yourself and be your own advocate. Good luck
Great advice! I already love this site. You guys are so nice and HELPFUL, traits I can’t seem to find elsewhere. I’m definitely changing doctors, or just going to the NS at OU medical and hopefully he/she will have better knowledge of Chiaris!
I got nearly the same results from my NL. He also put me on topamax and I had the same lousy side effects. I too feel better off the med/s. I am hoping for better results at my 2nd NS visit coming up. I have cancelled my NL follow-up. Good luck to you. I think you’re on the right track.
I have an NL follow-up on the 28th (which is rare disease day btw!) and I think I might cancel it. No point going to him again if he won’t even listen to me and treats me like a village idiot!
Hi Laura
I live in NZ, which as small country must be like living in a small town in the US. There is a total lack of info available for NZ online. until I found this support website last month which is a well of experiences and advice and great caring people.
United by this - YOU ARE NOT ALONE!
My story with CM only started with my diagnosis pretty much one year ago today. I was totally freaked out and not a day goes by now that I don't have it impacting in one form or another.
My log in name is Forget me knots - because I suffer from memory loss as my most frightening symptom I get myself worked up and stressed out and then I'm hopeless at getting anything done.
No one in our medical centers knows anything about CM. I think anyone who says that Chiari doesn't cause real life altering symptoms is taking risks with your health due to ignorance.hes trying to bluff his was through and bullying you with the meds.
I can't advise on meds because I really haven;t been given anything more that high strength Paracetamol. and blood pressure tablets.
But from what I have read on this site, there are Chiari Specialists out there. I'm sure that shortly there will be other replies with helpful info on how to track them down - That's the beauty of where you live they actually have Centres and specialist in this field.
So my advice is stay online here as much as you can and find out who is recommended and do what ever you need to do to go see that Specialist and most certainly - dump that jerk of a doctor you've been seeing.
Steph :-)
I bet living in NZ is a heck of a lot prettier than Oklahoma though! I’m so sorry that there aren’t any specialists there 
Maybe if enough awareness can be raised, more doctors will catch on and finally give us some help! I’ve only been on this site for one day and I already feel like I’ve finally found a place of refuge that I belong, that I can relate to people!
Welcome to the party. There's a wealth of knowledge here and you wont have to go thur anything alone we are all here for you. I'm on my second NL which is one of the rare ones who is a CM adovcate. Now on to my second NS because the first one thought I had blood pressure problems. Like most of us you are going to have to research and learn what to ask the drs. Good luck finding a dr you like.
I’m so glad you’ve found a good NL! That’s the kind of news that gives me something I haven’t had in a long, long time: HOPE. I definitely don’t feel alone anymore, which is something I’ve always felt when it comes to my migraines and every other problem my Chiari has brought. When people say to me “Oh, yes, I know what you’re feeling, I have a migraine right now too. I can handle it though, I don’t see why you can’t. Guess my tolerance is just higher” I want to laugh in their face- they don’t understand! I look forward to sharing my journey and being there to support others just like y’all are supporting me.
Laura, We all live with pain and true some of us do have a higher pain level or we just get "use" to it. Since I hate taking pills I try to manage as long as possible which makes ppl not understand the pain I'm in, but we have eachother here. I would also suggest having a close friend or family member be with you along the way. Drs appts are hard enough but with someone with you to help talk to the dr and to listen to what you missed is great. Dont go thur this alone its a hard path. Always remember that ppl love you and try to smile often its good therapy
I have my mom- she understands my pain and she’s been with me every step of the way. I’m a positive person by nature, I just get brought down so easily by pain. I’m learning how to smile through it for now until I can fix it later!
Laura,
Welcome to the joys of Chiari and the medical field. I fired my Neurologist and work with my PCP. He doesn't know much about Chiari but he's still willing to work with me to block the pain. I have found that if a doctor doesn't listen to me they do more damage then good. Every medication reacts differently to every person. The only thing I can suggest is to research Topamax yourself? How long does it take to fully work, what is the normal dosage? Some Doctors just don't listen, it's almost like they can't admit that they might be wrong. I would say it is definitely time to find a new Doctor. I didn't bother to get a new Neurologist since I don't see any value to it right now. I have two doctors who are doing the best they can to block the pain and also to manage the pain. My Neurologist and the Neurosurgeon both said I didn't have Chiari but since finding it in my oldest I've realized that I do have it, it's just really mild. Unfortunately then symptoms are not. I have yet to try Topomax but if you don't feel it is working then I would trust your instincts. You know your body best and sometimes the side effects are just not worth it. There are so many medications out there, I'm sure that you will find one that works for you. Unfortunately it is a trial and error but if you stick with it I'm sure you will find something. Don't feel that you have to go to a Neurologist for the medications. If you already have a PCP that you trust maybe try that route?
Sarah