Searching for a diagnosis?

[flutegirl449]

(sorryyyy this is so long! summary at bottom :p)

so i've been having headaches for a little over 5 months now, like chronic, pretty much daily. it's whenever i have to hold my head up too long, or move it too much, things like that. It comes along with a whole host of other symptoms, main ones being pressure in various parts of my head, like nose/back of mouth, and especially eyes, short term memory loss, and spots in my vision, like what you see when you press on your eyes, flashing lights in vision, nausea, dizziness, and weakness. I also have a lot of trouble swallowing and sometimes breathing. The pain is usually around the back of my head at the base of the skull, but it also moves to the top of the head sometimes, and sometimes i get sort of shooting pains into my eyes from the back of the skull. A lot of times when it gets bad, turning my head will make one or both ears ring for a minute or so. Also, sometimes parts of my face like around my eyes and cheekbones goes numb. A few weeks ago a blood clot came out of my ear, which i thought was an ear infection but was told my multiple doctors my ears looked fine, so i'm thinking it was related to this. It used to help to ice it a lot, but recently it's been feeling like i get a brain freeze from icing it (except it lasts longer than a brain freeze) which i guess could actually be whats happening? It hurts to have pressure on the back of my head/base of skull, so like cervical collars don't help because they all hurt that more than they help not being able to hold my head up.
The headaches are just so much worse than any other one i've ever experienced, they're like 10x more painful than dislocations usually are even. And they're completely different from migraines i usually get, so i wouldn't really describe them as a migraine, and they're worse worse and different than any tension, period, sugar, dehydration, dehydration, or any other kind of headache i've ever had.
So my doctor ordered a brain/c-spine MRI in december, and i fought with insurance straight until last week, because they just absolutely refused to cover it for whatever reason and denied it twice. Anyway i finally got it done, and today i got the results. which showed that i have two herniated disks in my lower C spine(i mean seriously, wtf, i'm not even 20 and i have 2 herniated disks already?!) and straightening of the C spine(loss of cervical lordosis) but neither of those explain like any of my symptoms.
And the brain MRI came back showing nothing.

So i'm just wondering if i should trust that... i mean some of these symptoms are DEFINITELY not neurological, so you'd think they'd show up on a test? and they line up so much with what i've read about chiari...and i also know that chiari's hard to diagnose with the kind of MRI i had (normal laying down, no way would insurance cover an upright >.<) and they were read my my rheumatologist, and it's not like brain disorders are her area, really. So i'm just not sure what to do. I've gotten to the point with these headaches i'm missing 3/4 classes a day, and they're getting worse and worse.

anyway summary: I've been having chiari-like symptoms for 5 months, MRI showed nothing conclusive that explained my symptoms, and i don't know if i should assume i'm wrong about chiari or not, or how to go about pushing for answers either way, especially being supposed to keep up with school for another month, and being 7 hours away from home.

[MallanFrallan]

My mri came back "normal" as well but I can see that its not. Im trying to get the mri pics posted on here so i can get some input fro people that actually know what to look for! (the docs dont kniw ****, excuse my french) Ive been experienced backpain for over 6 years with no explanation. And was just diagnosed with fibronyalgia ib sept, but im wondering now if maybe i was misdiagnosed since i read that chiari can cause muscle weakness and sone other synptoms that are common for chiari as well. (can think of them now,brainfog) See if you can get a copy of your mri scans and get a second opinion or third if you have to!! I feel like we dont fight enoigh for our health, ive beeb able to tell that theres sonething wrong for a long time and its just a matter of finding a doctor thats gonna fight for you and believe you. I feel like a hypocondriac all the time and i know people think im nuts but I just wanna have some answers and feel better already...

[flutegirl449]

Yes, I do have EDS too, which is why I was worried about Chiari since I know it's common in EDS. The disks and cervical lordosis just doesn't seem enough to cause all the headaches and the neurological symptoms too, I was thinking?
I'll definitely get copies of the tests though, thanks for the info!!

[selmaS]

  Hi and welcome to the Chiari forum.

  I know how frustrating it can be working with the ins companies and trying to get testing all for a DX so u can finally get treatment all so u can feel better, the whole process only adds to help us all feel worse.

Did u get a copy of ur MRI and the report? If not, contact the facility that did the study and request them, going forward always ask at check in for testing and they will be able to give u a CD from the MRI and will mail the report.

Many with Chiari do have issues with their disks, but this indicates an underlying condition which I believe u may have since u did join the group...Ehlers-Danlos Syndrome? This can account for ur HA's, ur disk issues,
  With EDS we can have cerviocranial instability....that alone can cause major HA's as well as loss of cervical lordosis...it changes the natural curve in the cervical spine and can create a pressure on the brain stem.

  Look further into these, get copies of ur tests.....

and keep in mind many Drs will declare a brain MRI clear or normal even if Chiari is present as they see it as an incidental finding....