Chiari Malformation anyone?

Been a struggle with doctors, nothing new!

I don't remember when or what I last wrote on here!

I finished PT for now, doing worse.  My shoulder, hip, knee & back have been bothering me quite a bit.  The PT gave me a massage one day & that night I slept on a heating pad & cried myself to sleep because of the pain.  Cancelled my next appt because a week later & it still hurt.  She asked about what happened & that made me uncomfortable... she was pretty insistent it couldn't be the massage.

Saw the rheumy again & was diagnosed with Raynaud's phenomenon & given meds.  I took a photo to show him, of my blue toes.  Because it seems everything is always dismissed so I am trying to document what I can.  Since starting a calcium channel blocker my hands & feet are not ice cold.  They feel normal, which to me felt really hot at first.  Said my nailfold capillaries were abnormal too.

I continue to have memory, concentration, comprehension & spelling problems.  I got sent to a neurologist, come to find out his specialty is sleep disorders.... why do they keep doing this crap to me?!?

So I get an MRI & am told everything is normal... I think there's no way that's right.  I requested my medical records as far back as possible, got over 100 pages in the mail, back to 2 months old!  Well what do ya know, my MRI from 97 says "tonsillar ectopia" and "cerebellar tonsils are low lying in the foramen magnum."  Unfortunately this MRI is too old to get images & there is no measurement.

I request my images from the one I just had & it seems a bit low to me.  This is also a horizontal MRI, not standing.

I am the one that did the ruler on there where I think they would possibly choose as the "cutoff point" of being IN the skull!  Now this is a horizontal MRI, not standing MRI.  It also looks like possibly a thin area for the CSF to flow?!?

Considering the notes from my first MRI & my symptoms, this is something I will not tolerate being dismissed! That is what my doctor is doing though!

I get headaches, migraines (that always start at the base of my skull), vision problems (retina specialist said there is no tear, just this week), dizziness, tinnitus (24/7 & loud as hell!!!), neck pain (chiropractor helped my TMJ & tried to help my neck), shoulder pain, ear pain.... the list goes on & on.

Lots of appts coming up.  Still trying to get my referral to physiatry.  Apparently I have been referred to 2 places & yet neither got any paperwork.  My primary doctor completely dismissed me & said joint braces will make me worse but go buy them myself OTC.  My rheumy & ortho had enough sense & compassion to request physio!!!

So the neurosurgeons that are familiar with this are on the opposite side of the state.  Could be worse I suppose.  I read that the severity is not measured by the extension, but more so by the CSF flow.  So I am going to ask my doctor about a cervical MRI or cine MRI, doubt he will be all that receptive to my perseverance.

I had my eyes dilated at the ophthalmologist this week & it triggered a migraine.  usually they come in clusters spread out by a few days or over a week between them.  Instead, for the first time it lasted 4 days instead.  Nausea, pain, but my aura was different & even gone for a while.  Today I finally feel like it is about 95% gone, still some pain/tingling.  It kinda feels like it falls asleep (pins & needles)  at the base of my skull, not sure how else to explain it.  I also had to use my cervical support because it feels like I can't hold up my head.

Well wishes to you all!  Hope next week is a better week!