Finding a radiologist to read MRI reports

[Guest guest]

Greetings, Long story, 20 years post jaw surgery to " help " congenital ear and

jaw problem, I'm still suffering from pain. Found a great pain doctor and PT 10

years ago and an amazing dentist about three plus years ago.

I am making " progress " in sense of peeling the onion and really identifying

where and why pain is still so intense and unyielding.

I had a CT scan of my left jaw and ear area two years ago at suggestion of my

team. (My dentist works closely with a plastic surgeon who does reconstructive

surgery, often for patients with terrible cancer, injuries, etc. Unfortunately,

CT findings did not provide an ANSWER for the pain.

Continue to work with pain team, including massage, meditation, yoga, meds and

disability retirement. I just had two separate MRIs of my neck and my face, ear

and jaw. Partly to identify what's really going on in that area.

My dentist and PT can literally feel certain parts of my anatomy when working on

me. My jaw is in a good position the joint no longer goes into ear canal when I

open and close my mouth. Much more symmetrical, etc.

Working theory is that there's a " nerve " tangled in scar tissue that sets off

pain pattern. When everything is in line, my pain can go down to a 6/7.

Doesn't stay. Once something triggers the " nerve, "

my body goes into a cascade of coping mechanisms including muscles spasms, etc.

Hope of doing MRI is to get a better image of the map of very altered anatomy

(birth plus surgery).

In my fantasy world, they can identify a neuroma or sensory nerve that's easy to

cut and shield and then I can make steady progress towards a life with pain

somewhere under five.

Just got reports of MRIs and, frankly, they're useless. The one of

my neck just made me MORE worried because it identified several new bad things I

had never thought about before. The report of my head says NOTHING useful. I

assume that the plastic surgeon who ordered the MRIs will do his own reading --

he has in the past. I've also heard there are some excellent radiologist who

specialize in this area.

Now that I've written this email, I realize I'm mostly venting. My family are

supportive, but they cannot read the MRI film any more than I can. Learning the

names for why I have pain in my neck isn't giving me any comfort -- in fact,

it's the opposite. I've assumed my neck pain is just a by-product of THE PAIN,

the area in my jaw and ear. I can send specifics if there are others who have

experience in this area. Until I get a better interpretation of the MRI of my

head, thank you for giving me a forum to share. And if you do know of any good

radiologists, let me know.