Pre-amble: I've always had migraines and tension-type headaches, but lately my symptoms are worse.
So back in February of 2012, I was run off the road by someone in Alberta. Between the road and the ditch was a pile of snow that had thawed a bit and then refroze, which launched my van about 40' in the air, flipping once before crash landing in the ditch (who knew Dodge Caravan's can't fly?). Ever since, I get the usual list of symptoms:
- Headaches triggered by strain/exertion/coughing/sneezing/bending over
- Mental fog
- Flashes of light in my vision
- Blind spots
- Dizziness, vertigo
- Poor balance
- Intense neck pain
- Intermittent numbness/tingling in arms and legs
- Unsteady gait, constantly bumping into stuff
- Episodes of rapid heart rate
- Memory problems
- Concentration problems
- Difficulty with speech
- Word finding
- Sensation of my head being constantly under pressure
My neurologist ordered an MRI of my head and neck. The radiologist reported "All findings within normal limits." But here's the kicker: I have a friend who is a retired health professional who has Chiari II and all her kids have Chiari I, and she has seen a bunch of MRI scans over the years of tons of people. She says I have Hypoplastic Posterior Fossa, and looks like I fall under the category of the ever controversial "Chiari 0," patients with chiari-like symptoms, but no significant herniation.
What I'm struggling with, is my GP, two neurologists, and apparently several radiologists simply don't see it. They all think I'm being crazy and that I'm making this up for attention. They simply dismiss the constant pain I live with every day.
What I want to know, is how do I talk to my doctor, specialists in such a way that they are willing to look into the dimensions of my posterior fossa and the significance. I've already made the enormously huge mistake of talking about my concerns from the angle of what I think is wrong. I need to know what I can do to try and roll this process along in a way that medical professionals will actually listen to me. I'm being made out as a crazy person, but I know that my skull is too small for my brain.
There r many Drs that do not recognize Chiari with a herniation, but the issue is not is u have a herniation, but if u have Chiari, that is the malformation of the skull which forces the tonsil to herniate and over crowding....
NE herniation can cause a CSF obstruction if it is wide, not long, so I feel they look to the wrong aspects regarding it completely./
Not all true Chiari specialists recognize Chiari 0...some use criteria to limit the number of patients they get...so they refuse to see patients with a herniation less then 5mm...etc...
So , it is not a wonder that u r having issues as some Drs look for the longer herniation's and classify 5mm and sometimes 7mm as mild....regardless of symptoms...which is unacceptable.
What u need next is a CINE MRI to see if u have an obstruction....that is what can cause a syrinx to form....
So many of us have been made to feel that is "was all in our head" which it is, but not in the way they insinuate...anxiety, stress, ....etc...
U may look to symptoms and work backward too, we all get tested for related conditions to rule them out...have they ruled out other conditions with the same symptoms?> Lymes, Lupus, MS,.....?
Get blood labs rule out low levels of vit D and B12 and low magnesium and potassium and thyroid issues....
Send copies of ur MRI and the report to a few Chiari specialists for review....u may have to travel to locate one, but u will finally see the difference...use the list of Drs we have in the Health Pages as a means to do ur research to locate a Dr that will see u and that is well experienced with Chiari and all related conditions as u also need to rule them out as they can affect how u feel and heal post op.
selmaS, thank you so much for your kindness! My dear friend with the Chiari II once told me:
"It can take a long time before medical science catches up with us, but eventually you will get some help. Until then you can collect all of the labels the ill informed doctors give you (MS, migraine, Hysterical woman syndrome, stress, depression, optic neuritis, allergies - and the ever popular Lupus - all of which I was diagnosed with prior to them realizing the issue.) and make a drinking game. Which of course you can't play - because people with crowded brains for any reason can not drink alcohol without triggering a massive headache or worse. Just another clue I guess. : )"
I'm seeing one of my neurologists in February, and I haven't said a peep about my chiari-like symptoms. I saw her for migraines, and so I haven't said a single thing about my other issues. So this next visit, I will describe my symptoms, and put an emphasis on the sense of pressure in my head. I won't utter the word chiari, and hope that she will do a lumbar puncture to measure CSF pressure. I'm going to talk to the GP I've blabbed to to see if we can get someone to take measurements of my posterior fossa.
In the meantime, Chiari II friend is looking into getting me into a study about the benefits of using upright MRI for diagnosis. My hope is that I can get into that study, and the upright MRI highlights my issues.
Luckily, my doctor isn't totally unwilling to help me, so maybe if I can make a compelling argument, she'll help me out and have someone measure my head. The biggest issue with her is she only cares about the money aspect. We're in Canada, so health is covered by the government. So she doesn't like to do anything for patients that's expensive; she acts as though each patient test, scan, or other medical cost is deducted directly from her paycheque. So unless she feels something is absolutely necessary, she doesn't want to do it.
There are times when it really gets me down and I feel severely depressed. But reaching out to the community has greatly boosted my confidence in ever reaching a diagnosis. Thank you so much for offering your support, I will bring updates as I get them.
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