Wondering

General
1

Hi, all,

So glad I found this place and happy to be here. Thanks for the welcomes.

I'm wondering what tests/evaluations each of you had before being sent to a neurosurgeon (if you've been sent) and what further tests were ordered.

I see a surgeon tomorrow. I think my current doctors have ruled out most other non-Chiari issues. My evaluation started with some bad falls (turns out to be foot drop) and trouble speaking and finding words. I have a recent history of severe, unexplained, recurring pneumonia -- no, I'm not 80. So far, I've had a special contrast CT of sinuses -- sinuses are happy. I've had a barium swallow with "cookie test" that a speech pathologist evaluated. Aphasia and swallowing issues, CNS related. I've been referred to Physical Therapy and they found peripheral neuropathy, muscle atrophy, risk of fall, etc. Lots of bloodwork -- thyroid, b-12, lupus, you name it. All clear. Oh, and a sleep study (apnea within normal range, they say) and poor delta sleep. The latter is being medicated and I am sleeping well. MRI's of brain and cervical spine. Brain shows Chiari (that I knew, from years ago) and doesn't report in mm. I guess it's a secret. (Sticking out tongue at radiologist.) Cervical just said (summarized) normal. Of course, I have to take all films in tomorrow.

(Personally, I'm figuring the "mild" swallowing issue is not so mild when I'm sleeping and I've probably aspirated stuff repeatedly -- primary dr agrees. )

I also saw a specialty ophthalmologist (primary referred me -- neurologist blew me off). Ophthalmologist is the one who referred me to neurosurgery. (He also referred me to neuro-ophthalmology but I got in with surgery, first.) I have field of vision issues -- apparently bad enough to warrant the referral to surgery (they got back to me in 2 hrs).

So -- I know a lot depends on the dr, and some are for surgery and some are against but I am wondering what tests others went in with, for the initial consult. What were you "armed" with, so to speak?

I feel rather poked and prodded, atm. Thanks so much for your help!

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MRI with and without contrast, CT, xrays on neck (loss of dspinal curvature). But nothing on mid or lower spine and yet Low CSF Pressure (Volume really) Syndrome is suspected so I don’t know why the mid and lower spine have been ignored. I also a urology test done but can’t remember the name of it. I see a neurosurgeon Monday. I don’t know what tests he has plamnef.

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Thanks for sharing that info. :) Do you mind saying what your symptoms are?

4

Appt was nauseating. Surgeon told me I don't have Chiari. Not like "you have mild Chiari that doesn't warrant surgery" which I would understand -- I'm not exactly gung ho on surgery, who is?

But, flat out, "You don't have Chiari". "Well, why did two radiologists say I do?" "They're wrong."

Seriously.

Also had EMG since last posted. Incredibly painful, still some pain and bruising. Negative of course. I've had every test except CINE and they all indicate a CNS source to my symptoms.

My nightmare is that I'm now perpetually shuffled from neuro to neuro, told I "don't have" Chiari, and my symptoms are attributed to depression or "unknown" causes -- even though I have tests showing real physical finding (like vision and swallowing and speech difficulties).

Surgeon was really a big jerk. Thanks for asking, btw. :)