It seems u have a god humor about all this....we do have a few other members in Canada that may also be able to suggest the best way to get care.
A study sounds like a good thing if u can get in.....
I was also tested for lymes and lupus, and MS....seems to be the typical conditions with similar symptoms that we all have ruled out....
Ur friend is soooo right it will take time for the medical profession to catch up to us <3
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.
Hi and welcome to the Chiari forum.
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.