I was diagnosed a few days ago with a 7-9mm protrusion. I have been having symptoms forever. I have gone to the hospital so many times finally I had numbness in my face and an ER Dr. picked up on the protrusion on a CT scan he did to make sure I wasn't having a stroke. He advised me to seek out a neurosurgeon, which I did. The neurosurgeon I went to performed decompression surgery on a friend of mines teenager a few years ago, with success. The problem is I do not feel comfortable with him. After two visits and an MRI on my neck he told me I had a Chiari 1 malformation but on the official diagnosis on paper he wrote congenital brain anomaly. He will not ever let me finish listing my symptoms and when I do get to say some of them he says that is not a symptom of Chiari. I have read so many articles and studies about it in the last few days and everyone of my symptoms are listed on everything I have read. Is this something that is part of the diagnosis, I feel like he is testing me to see if I am lying about symptoms. I have heart palpitations several times a day and my heart will race for no reason especially when I lay down. I have been going to a cardiologist for a year now. He says I have the heart of a marathon runner and to quit worrying about it. I have an implanted heart monitor now and it shows that I have PVC's everyday which two cardiologist say are normal. Could this be a symptom of the Chiari? I have a neurologist appointment in January that the neurosurgeon made for me he said this Dr. will rule out symptoms as being Chiari caused or not. My son has been diagnosed with Narcolepsy but I wonder now if he has Chiari as well. Is it genetic? I am so frustrated I feel like even though I have a diagnosis I am still being treated like a hypochondriac.
Don’t let anyone tell you how you feel. It’s your body and you know when something is wrong. If they refuse to believe you, start looking at someone else. Doctors essentially work for you and should listen to you when you say something is wrong.
I wouldn't feel comfortable with him either! It doesn't matter if a specific symptom IS or IS NOT related to the Chiari because you are experiencing it. Chiari Malformation is a relatively new and so little is known about it (in comparison to other illnesses and injuries.) You really need a NL and NS who is willing to look into the big picture and the best way to treat ALL your symptoms. Many of my symptoms weren't related to Chiari but WERE related to a decrease in CSF flow or a blockage. Limited CSF causes a slew of problems that aren't a direct symptom of Chiari, but are indirectly caused by it. Find a doctor who will listen to you. Depending on your area, many people are able to give you suggestions.
I went through the list of symptoms and I can check off about 90% of them. May cardiologist is pretty amazing and I know if I call the office and ask for the test he will order it. I will do that this morning. He is very intrigued by the Chiari diagnosis as he has been working hard trying to help figure out my palpitations. I saw him on Monday and he said once I go to the neurologist to bring him all of the MRI discs and any reports and he is going to send it to some doctors he knows in Texas and at the Mayo Clinic to help me. He is worried that Louisiana is not the best place to get help for such a little known disorder. Worst part of all of this so far are the palpitations. They freak me out so bad I feel like I am about to drop dead when they happen and the fog that I am in most of the time, I walk around feeling drunk. It is affecting my work so much. I am the managing partner of a restaurant and I am starting to fail a lot at my job because I cannot remember anything and I feel detached from what is going on around me. I get confused so easily and I make alot of mistakes on paperwork because I have to get up alot while doing it and I cannot remember what I was doing when I come back to it or I just forget it all together. Sorry if I am just venting.
Thanks, for posting that Beeba you just sparked a lightbulb. I went to the cardiologist Monday because the nurse who reads the heart monitor transmissions called me and said my heart rate jumped from 70 to 130 the other morning while I was asleep it woke me up and I marked it on my monitor. The Dr. said he would have to see more to worry about it but he was open to the thought that the Chiari was causing it. It may be happening and I don't feel it all the time. I have not called him yet today. I am going to call them after lunch and talk about scheduling the tilt test.
Jacob, I developed pots and innapropriate sinus tachycardia right after my decompression. I started on propranolol originally for “migrain” with my NL (she doesn’t know what Chiari is) but so happens propranylol is a beta blocker. Got rid of 95% of dysautonomia symptoms. Please also spend time looking into Ehlers Danlos Syndrome- another biggie. Narcolepsy shows up with us too, you may have your boy get an upright brain mri.
So sorry you are struggling at work- what an awful looming feeling. The B blocjer helped me with a lot of the brain fog and dizziness. Hang in there.
Jenn