Newly diagnosed and totally confused

General
1

was in great physical shape until January 2012, then I was involved in a rear end collision. Suffered headaches, neck pain. first MRI in April 2012 showed nothing....continued treatment for whiplash with spinal injections and chiropractor and numerous pain medications, nothing helped.

Life continued to deteriorate....short term memory loss, unbalanced, headaches worse, worse neck pain, vision getting worse, vomiting, agitated, insomnia, temperature control, dropping things such as my keys......another MRI February 8,2013 revealed Chiari at 5.7mm, and vertebrae C3-C7 bulging with some flattening of the spinal column. Neurology and CSF flow test recommend.

Went to neurologist today and she told me..... Chiari has nothing to do with my symptoms, that I was born with it at 5.7mm. Bulging discs are from age, and they are not interfering with spinal fluid/spinal column, even though the 2nd MRI suggests it is flattening the spinal area.

Neurologist pokes me behind each ear, and it does hurt because i have a constant headache, but she is insists that is how to diagnose a pinched occipital nerve, and that i needed a nerve block.

I asked her to explain why the Chiari didn't show up on the first MRI and her response was it was there, doctor who read it probably didn't think it was of any significance......but the 2nd MRI specifically mentions Chiari 5.7mm, and suggest neuro consult and CSF flow study....and when I asked her if we could look at the difference between the two MRI's to see if the Chiari had grown, she tells me that's the size it's always been and they don't grow.

I live in Indiana and have yet to find a Chiar specialist. Anyone have any suggestions? I called my family physician today and he is going to call me back tomorrow after "thinking" about this predicament and whether I should do the nerve block or be referred to another neurologist.

ANYONE HAVE ANY SUGGESTIONS?????? Thanks!

2

Sorry you are going through all this. I live in Indianapolis. Went to two neurologists here and one neurosurgeon before I finally just took it upon myself and called the mayfield chiari center in Ohio. I researched a lot of neuro’s here in Indy and found none that actually deal with chiari on a regular basis. I asked my primary doctor to order the additional MRI’s and she did and then started with Mayfield. Within 4 days of them getting all my information they called me to set up an appointment. I see Dr Tew on the 20th of this month.

Unfortunately as you have probably seen on this forum, a lot of us go from doctor to doctor before we find one that won’t dismiss chiari. I am thankful I found this site and went my own way with everything instead of doctor hopping.

I hope you can find a doctor or look into Mayfield. I don’t know where you are in Indiana but Mayfield is in Cincinnati so it isn’t too far for me.

3

Girl you just learned your first lesson neurologists are hard to make understand and if one of us has one who is great with our situation they are the chupacabra of neurologists lol I has to act like a freak with a weird fake smile on my face and put my hand over her keyboard and tell her that if she as the ‘brain’ doctor couldn’t help me I had to go to someone who was more capable because I was a patient with a lot of drs but no one was treating me and what was wrong with me was from the neck up and we’d already established it wasn’t psychological so if she wasn’t capable of doing it could she refer me to someone who she had confidence in? I still don’t like her and my husband despises her butttt it lit a fire under her arse and she found me a qualified ns and ran more tests and got down to business it was a joke before the two times before I left her office crying and my husband was in a rage

4

thanks everyone. so i realize that you can't fix stupid therefore I have compromised and agreed to do 1 neuroblock in the occipital nerve area.....then neurology and family physician will refer me to neurosurgeon if it doesn't help......well i know they are usually a temporary fix, and it won't help (wink * wink).....so i'm gonna get my referral.

I can't seem to find an answer online for this next question.......... I've read that some people are born with C1M, and some "experts" say it can be triggered by a head trauma.....my question is.....if the C1M didn't show up on the first MRI, but is now at 5.7mm on the 2nd MRI......does this indicate mine was triggered by head trauma?

Also.......if I was born with it, was I born with it at 5.7mm and because of the head trauma I'm now noticing it....... or does it grow????

Thanks for any help.......and btw, I live in SW Indiana, Knox County

5

i know the feeling i was told i was born with mine and its 13mm and two years ago i fell down the stairs to my basement and after about two months i was starting to realize the faint pounding pressure in the back of my head, i went to my doctor and three others in the same office, and went to the local er twice and was told they don't know why i was hurting and feeling week and that a ct scan was too costly and my eyes when they looked in them were fine, so finally i went to the JCMC and they did a ct scan and admitted me to do a mri and found what i had, but the ns i went to said it was fine and treated me with pain meds. but now a year later and nothing is better and getting worse i finally a ns to do the surgery and says most to all my symptoms should go away. i am sure we were born wirth them and a head trauma triggered it. i hope you understod all that???

6

i'm feeling a little better....... i called the Mayfield Clinic yesterday, and was able to talk to their "intake" person......who assured me that 5.7mm is not something to take lightly.......he said i could've been born with it, or it was triggered by the car accident.......anyway, he took my information, and I'll be sending my MRI's and reports for a doctor to look at to see if it is something that needs immediate attention, or if he can recommend to my family physician what to do, and how to manage it.......so i feel a little less stressed.