It's a RED FLAG Symptom... WHY Will No One Listen?

[improbablegirl]

hi.

So, it's my birthday. And i thought, i was going to at the least....get an MRI, if not MRA ordered....

Nope.

I thought, the chief of neurology....would listen.

Nope.

I've had this, new, since February. On one side.

ENT thought ET tube dysfunction, I had been sick, it made sense, I went with it. Went back when it was still there months later , they did testing....have an ET dysfxn, on the *other* side.....

Nope.

I also have Chiari, and Ehlers Danlos Syndrome, among other oddities.

WHY. Won't someone listen?
Optometry wanted me to get an MRI, figured neuro would order it.

Nope.

Ktwjrgjrgvarjggvkwgjeabkwr

Anyone know someone in the Midwest?

And, has anyone found video/audio examples of say ocular/carotid bruit etc? Got myself a stethoscope, since....you know. But I can't find good examples of what it should sound like....

I'm tired.

What a wonderful birthday....admittedly, I've actually had worse...but, that's not a good reason

 

[MikeP505]

Ummmmmm, wow. Happy birthday just the same. Not sure what else to say here. Hopefully someone else will chime in with thoughts and suggestions.

In the meantime.... I really mean it....... happy birthday Igirl!

 

[suze]

Well..........welcome to the wonderful world of Tinnitus. Sorry to hear what you are going through. At least you are in good company here on Tinnitus Talk.... A carotid bruit will sound kind of hollow, like wshh wshh instead of thump thump. Happy Birthday and I wish you many better ones in the future.

I agree that it seems reasonable that with the EDS and chirari they would want to look closer. If you haven't had a scan in a while I think you could insist on the grounds of worsening symptoms. Maybe they don't want to scan because they already know you have the EDS and chirari. Tinnitus is a common symptom of this unfortunate duo. If your new MRI sees nothing you can also request a second opinion from another radiologist. Sometimes one radiologist will see things another missed. A lot depends on who reads the MRI. For example; my son has a brain tumor wrapped around his aorta and optic nerve. We had an MRI done here when his eyelid started drooping and were told his tumor had grown. We took the MRI to his neurosurgeon in Seattle thinking all kinds of horrible scary thoughts. The neurosurgeon said NEVER have non-neuro radiologists read his brain scans. The tumor was actually stable. We now drive to Seattle to have all our scans done and read.

 

[improbablegirl]

Thank you both.

Oh Don't worry, I'll read my own MRI......ok so the MRA would be easier...but since I have a past MRI, I'm excellent at comparing one to another.

I found someone in Chicao and someone at Hopkins who's published on CCF and EDS. Thought I'd have imaging results to talk to them about by now....grr.

I think I'm going to send msgs to cardiology....and maybe ENT....sent one to my optometrist, since he wanted to make sure I got an MRI. This is SO nonsense....

And to boot..now I've got *both* types of tinnitus on top of each other.... *sigh*

 

[ReyKalinic]

what a beautiful rapid cycling!!!