Met with the ns he looked at my nails moved my feet around, told me people read way to much into chairi dx on MRIs that MRIs are like Italian models beautiful from afar but once you get close up you can always find flaws. He has ordered a cine MRI along with me seeing an opthomologist and infectious disease doctor, he is ruling out the chairi he said but he did say he also found the cine MRI unreliable for chairi testing also. He said he probably isn’t the doctor I need to be with ( at this point I started crying because I honestly can’t take this much longer) but he is ruling everything out with the cine and the "back of the eyeball " test with the eye doctor and wants to see me back in two months. Oh he really thinks I have some strange brain infection hence the infectious disease doctor. What do I do? Really what do I do
Is NS-neurosurgeon or neurologist? It planing states on my MRI report finding of Chiari Malformation Type I.
I know exactly how you feel, the NS took all of about 5 min with me and blew off all the reports and images from when I was in the ICU, said sorry I dont think I can help you, and he is supposed to be the best of the best when it comes to CM, so I am getting a second opinion, I think that is what you should do as well. It almost seems like he thinks CM is just some made up condition rather than something real, as in its not something he would ever treat, so yeah deffinitely get a second opinion. I think its so funny how to them its no big deal to live with all the symptoms, I am really sorry you went through this, but dont give up!
The weird thing is that all these docs ARE totally acknowledging that there is something "terribly " wrong with the right side of my brain. Even this doc, he is supposed to be the best base of the skull surgeon here in San Antonio mean while I know I need that cine MRI and I have to see an opthomologist because my vision is getting worse daily but seriously I need some direction. He is very determined that I have an infectious brain disease I just can’t take it any more. The only hope he gave me was that he said that he said if it was the chairi the size of it doesn’t matter it’s the symptoms but there is such a huge list of symptoms that he thinks less people have it than are really diagnosed
Don’t give up,keep your head up.I’ve searched 27 yrs. before finding someone to help me,there was at least 15+ dRs.juSt recentlyI’ve had surgery and I’m still healing but can already feel a difference.Drs.don’t know how horrible things really are for us,another opinion is certainly good advice. Never give up you are your own advocate,you have some great friends here who know how you feel.
I have to be completely honest I wasn’t the one where I had headaches my whole life, literally this time last year I owned my own business ran 4-7 miles every day considered napping “being lazy” woke up at five am and got going and didn’t stop with mom work or home activities until ten when I went to bed. Now… Business shut down barely leave the house because I am dizzy nauseous in pain or in a haze all the time, oh and I shouldn’t even be on the road because everything’s a big freaking blue now and the sunlight hurts my eyes. I’m a mess. So the thought of waiting two months much less. TWENTY SEVEN Years. How do some of you people literally survive. Because let’s face it thanks for the Vicodin but it doesn’t work and nothing else has so far either.
Brandi,
I had to laugh when you said 'how do some of your people literally survive?" It reminded me of when my PCP asked me how often I had headaches and I said 'pretty much every day" and she asked me why I never did anything about it. I could tell she was shocked. The truth is, for many of us, that it starts gradually and becomes your normal. I didn't realize other people didn't have headaches like I do. Or at least, I didn't think it was unusual. I chalked it up to so many different things, life stresses, not getting enough sleep, allergies, change of seasons... You name it, I blamed it on everything else.
It was only when my headaches started getting worse and other symptoms started surfacing that I sought help. I actually was certain I had an ear infection and that all I needed was an antibiotic. (because I had neck pain, sudden worsening in my hearing and headache that wouldn't go away- I figured it was an ear infection)
Instead of an antibiotic, my doctor called for me to have an MRI at a local hospital 2 hours later that afternoon. Fortunately, she had a student doctor in training following her that day and she did a very thorough exam- or it would not have been found at that time.
Anyway, many of us just got used to living in misery lol.
That's EXACTLY what happened to me. Exactly. Sent to the ophthalmologist, sent to the cardiologist, sent for more MRIs... I have seen so many doctors in the last six months, it's ridiculous! The last neurosurgeon I saw said the same thing to me: "You need to get a fourth opinion - have you thought about going to Seattle?" And I also burst into tears.
It's so disheartening to hear that over and over. I don't have the answer because I'm in the boat right with you, Brandi. People keep saying take it one day at a time but I don't want to spend the rest of my days this way. I want my old life back...
Hang in there...
Katrina W.
I went trhough the same things, as most of us do before surgery. It is very frustrating when you feel like garbage. My NL thought that I had an infectious brain disease also. They ran every test known to man and everything came back normal. Let them run the tests....and in the mean time, look for another NS. It won't hurt to have everything ruled out for that NS or a new one, then you can go into the appt, results in hand and then they will have to take the Chiari seriously. I know how hard it is, trust me, but keep pushing forward...one day...one doctor appt...one test at a time. It felt like FOREVER, but it will eventually work out. Keep you head up and keep the faith! I had decompression in December of 2011, it has been a long healing process and I am still not 100%, but I am seeing some improvements. I am still struggling with appts and doctors for post op diagnoses, but I am headed in the right direction....forward. Best wishes!
My eye doc missed my downbeat nystagmus but said I was focusing on two different points and put prisms in my glasses. My nl who I've seen for several years for sleep apnea started treating my migraines then told me all other symptoms were in my head go see a shrink. The docs and ppl in general are a pain to deal with especially at work. You hurt every day and nothing really takes it away. I cant do the things with my kids that I use to which hurts the most But in the morning I wake up a say bring it on. Once you give in to any of it the dr the meds the pain etc you start to lose yourself. Headup stay strong
Sydney girl if you can do it not whining anymore (or not as often) 
you are my new inspiration you are a total rock star we all are but you kids REALLY are.