Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
Hey everyone.. I am new to this group, and to Chiari for that matter... I'll try to make it short..
About a year ago (when i was 24) I started suffering from intense headaches and a "locked-up" sensation in my neck and shoulders with horrible pain.. after a CT (which showed low-lying cerebral tonsils) a neurologist told me it was probably just tension headaches.. he prescribed vicodin, which made me dizzy so I tried not to take them.. the headaches subsided for a couple months but then I started feeling dizzy often.. more recently.. about a month ago I passed out in the shower and was horribly dizzy afterward.. I was hospitalized for two days and was given many tests, mainly for my heart.. i wore a cardionet monitor for 21 days.. meanwhile the dizziness increased and my balance got worse, and my headaches and neck pain came back full force.. my cardiologist said "maybe thyroid" and for dizziness said "put your head between your knees and get up slower"... right... anyway, toward the end of my 21 days on the monitor I passed out again and started falling down repeatedly,, also horrible nausea and vomitting.. my GP wouldn't admit me right away and said maybe it was viral and would go away.. next day same thing, my husband had to scream at my doc to get him to do anything.. then i was admitted for 3 more days and was now given an EEG and EKG and brain MRI.. eeg, clean, ekg, fine but the MRI showed Chiari 1 malformation (which i now know was the same finding as the ct months ago).. anyway the resident doc said thats what was causing my symptoms.. but the neurologist told me it had nothing to do with my symptoms and was too small to make a difference.. the resident still insisted I follow up with a NS... my gp sent me home telling me that my "body just needs to heal, and it will just go away".. so frustrating.. anyway I got an appt with a NS who everyone says is the best around here, for next week... since I feel like I have been on a wild goose chase to figure this out, I would love advice on what to ask my NS.. sorry this was so long.. thank you.
About a year ago (when i was 24) I started suffering from intense headaches and a "locked-up" sensation in my neck and shoulders with horrible pain.. after a CT (which showed low-lying cerebral tonsils) a neurologist told me it was probably just tension headaches.. he prescribed vicodin, which made me dizzy so I tried not to take them.. the headaches subsided for a couple months but then I started feeling dizzy often.. more recently.. about a month ago I passed out in the shower and was horribly dizzy afterward.. I was hospitalized for two days and was given many tests, mainly for my heart.. i wore a cardionet monitor for 21 days.. meanwhile the dizziness increased and my balance got worse, and my headaches and neck pain came back full force.. my cardiologist said "maybe thyroid" and for dizziness said "put your head between your knees and get up slower"... right... anyway, toward the end of my 21 days on the monitor I passed out again and started falling down repeatedly,, also horrible nausea and vomitting.. my GP wouldn't admit me right away and said maybe it was viral and would go away.. next day same thing, my husband had to scream at my doc to get him to do anything.. then i was admitted for 3 more days and was now given an EEG and EKG and brain MRI.. eeg, clean, ekg, fine but the MRI showed Chiari 1 malformation (which i now know was the same finding as the ct months ago).. anyway the resident doc said thats what was causing my symptoms.. but the neurologist told me it had nothing to do with my symptoms and was too small to make a difference.. the resident still insisted I follow up with a NS... my gp sent me home telling me that my "body just needs to heal, and it will just go away".. so frustrating.. anyway I got an appt with a NS who everyone says is the best around here, for next week... since I feel like I have been on a wild goose chase to figure this out, I would love advice on what to ask my NS.. sorry this was so long.. thank you.
Let me just say again that it is so maddening to yet again read where a patient is treated by a doctor(s) the way that you have been treated. GGGRRRR! It makes me so mad that these docs think they know everything, and they pass patients along and tell them their problems are emotional and to go home and rest and they'll be all better!
I know one gal who was told to go shopping and she'd feel better, and another was told to dye her hair and she'd feel better!
I myself was told by a major Chiari expert in CA to "get off the internet and get on with your life." I will never forget how hurt I was, how I cried all the way home (170 miles) and felt so rejected and helpless.
Okay, some questions for your new NSG that I can think of. Be sure to write down all of your questions so you won't forget any, and be sure this new guy is willing to sit and talk to you and answer your questions. If he is in a rush or not willing to answer your questions, cross HIM off your list.
1) at some point, ask him how many Chiari surgeries a month that he performs. Is he involved in Chiari research/studies? Katie, you will find doctors telling you they are well-acquainted with Chiari, but when you press them for the number of CM surgeries they do, if they answer honestly, it might be 2 a year! It's best to eventually go to (if the new one isn't a fit) a true CM specialist who performs these surgeries every day.
2) Tell him you want to see YOUR MRI up on his computer screen and ask him to show you your cerebellar tonsils. Ask him how far below the foramen magnum your tonsils lie.
[one caveat here: if you have low lying tonsils, some NSGs will brush this off as not being the source of your problems, as you've already experienced. I guess this is a good way to learn how your NSG views low lying tonsils, or Chiari 0.]
By asking him this, you are sure HE'S evaluating your imaging, not just going off the radiologist report!! Be sure to take notes while he talks, so you won't have to remember.
3) Ask him for a CINE MRI, a procedure that tells if you have any blockage of your CSF flow. This can be "iffy" because if the CINE comes back showing no problems with flow, you might get brushed off again by the doc. However, a CINE must be read by a professional who understands how to read them...it even has to be given by a technician that understands Chiari, and you might have a hard time finding that locally. So...I guess I'm not too sure what to advise as far as the CINE goes. I guess if he is brushing you off and saying your problems are emotional, etc, that might be the time to ask for a CINE. If he is respecting you and attributing your sx to your CM condition, then maybe let him decide if you need a CINE or not? I don't know...?? sorry!
4) Ask him if he sees any problems with your odontoid. You will have to be open with him that you have been on the internet researching your condition. He might not like that. Many doctors do not like it (like the CA expert I went to). But...CM can have many related disorders accompanying it, such as retroflexed odontoid, cranial settling or cranial instability.
Katie, if he's not the type to respect you for what you've found on the internet, then don't keep hammering him with questions like this because it's probably not going to get better. If he is respectful of you and what you've researched, then he's a gem!! He might not be the Chiari expert you really need, and then again, he might be fine for you. But he's a gem if he respects and likes his patients!
5) Ask him directly what is the cause of your dizziness and falling?
Can you tell me more about your falling? Do you feel dizzy until you fall down? Or do you fall without any warning symptoms? If you are dizzy, then that is something different than a drop attack caused by brainstem compression.
Oh, be sure to take with you a list of all the symptoms you are experiencing. Highlight the top 3 that are bothering you. I know it's hard to just pick out 3, but that is what the NSG will probably ask you and this way, you'll be ready. Hand him a copy of your symptoms! and say to him something like "I'd like you to read this and put it into my file." Say that with a friendly smile. That way, it IS in your file and he knows it and no one can say later on, "She never told me she was experiencing THAT!"
One thing you might consider on the dizziness (if you have stopped the med that started you feeling dizzy) is, are you holding your breath?
This sounds like a simple thing, but it often the cause of our feeling lightheaded or dizzy. In the shower, you might be not thinking about breathing and holding your breath and down you go! I do it when I bend over to empty the dishwasher and I have to remind myself to breathe.
If you have brainstem compression from your Chiari (and it doesn't have to be the tissue of the herniated tonsils actually touching the BS, but could be CSF that is blocked at the Foramen magnum. Compressed liquid is just as hard on neighboring tissue as other tissue or bone), this will interrupt your breathing. You might have sleep apnea. How do you sleep? Does your husband mention you snore? Do you wake up knowing you have stopped breathing? IF you have central sleep apnea, that is a good indicator of BS compression. If you wake up a lot at night, you also might have apnea.
6) Maybe ask him for a sleep study, if you feel you are not getting the sleep you need.
7) Be sure to ask for a copy of the imaging done (it prob. will come on a CD) AND ask him for a copy of his report.
8) Gosh, I have so many questions I could ask a NSG, but I'm not sure at this time if this NSG will be willing to talk to you a long time. I hope he will. Many times, people get a good doctor and I pray yours is one of those!!
Katie, where are your HAs?
Well, sorry this is so long...I'll add more if I think of anything and I hope others will do the same!!
Virginia
Katie