I am new to this community and I received a letter in mail from my doctor last week stating that Chiari Malformation 1 has been detected. I was upset mainly because I did not know what this condition was and the fact that my previous MRIs has never detected anything like this. I'm trying to find an answer as to why this happened. Last year I had an MRI on my head and they did not find anything wrong, only a sinus infection. The reason I had this done was mainly due to the headaches. The year before that, MRI showed nothing. My recent MRI showed the Chiari Malformation. Can someone explain to me why this was never found in the past? I bruised the back of my head a few months ago and could that have caused it? Sorry, I am just trying to process this all. I am the kind of person that likes to have an answer for things.
I may have been missed, but it’s also possible for a head injury to cause a herniation. There is just lots of unknown about Chiari. Hopefully now that you have been diagnosed you will be able to get treatment that helps with your symptoms.
thank you for your replies. its all so very confusing and scary. i dont really have much symptoms but started getting the uncomfortable neck pain on and off. sometimes i feel like the nerves in my hand hurts. if i recall last year i got very sick with the stomach virus from my kids and a strep throat. i felt so weak for two months and they didnt know why. i would be food shopping one day and my legs felt like spaghetti and i couldnt stand much longer. then they said i had a low vitamin d. taking supplements made me feel better but that year i had the mri and it did not show chiari. maybe it got worse when i moved and i picked up a lot of heavy boxes and then banged my lower part head. after i banged my head i got constant headaches and tingling in the head. it disappeared last month. what should i do next? i have an appt with the neurologist next week. i read that surgery is painful. have you had surgery?
what about minimal invasive surgery?
Suzy- the reason why my doctor sent me the letter is because I found that they had the wrong phone number listed and they originally tried to call me but was no success. I downloaded the Conquer Chiari on my nook and it has great information. Thanks! I know I should see a neurosurgeon, but I wanted to get input from my neurologist first as she is the one who treats me for migraines. Did you have a decompression surgery? I read there are risks with that, kinda making me nervous because I have four little kids.
Good, glad to hear they did try to reach you by phone!
No decompression yet. My neurosurgeon is leaving it up to me and we decided it best to try to
separate my symptoms...c5/c6 herniation and the chiari. My chiari symptoms have been mild to moderate though are progressing. Mostly neck pain, but again which came first the c-spine or the chiari???
I didn't have any headaches until recently. They are mild compared to what I call my 'hormone' headaches, but
they create a brain fog that I don't like. On a really bad day I would opt for the surgery and get it done right away...then on a good day, I convince myself that it isn't so bad! Fewer good days now too. I've had 9 weeks to adjust to the thought of surgery. Time and research make it easier to consider the possibility of brain surgery.
I would like to wait until I get back to Vermont at the end of April, but the first appt. they had available back east is June 4th. That's just for a consultation...
tweetycute122 said:
Suzy- the reason why my doctor sent me the letter is because I found that they had the wrong phone number listed and they originally tried to call me but was no success. I downloaded the Conquer Chiari on my nook and it has great information. Thanks! I know I should see a neurosurgeon, but I wanted to get input from my neurologist first as she is the one who treats me for migraines. Did you have a decompression surgery? I read there are risks with that, kinda making me nervous because I have four little kids.