Did they check the C spine MRIs X Rays very closely to verify that there are no extra cervical ribs?
Sometimes they are missed, or as children grow , so do the extra c ribs and they begin to cause more problems..

If it has been awhile since the imaging, a re check or at least fresh x rays might be a good thing..

c rib images-
https://www.google.com/search?q=cerv...IVVP5jCh3FgAi2

Our Thoracic outlet syndrome (TOS) forum has more related info or use search tool for past posts.
http://neurotalk.psychcentral.com/forum24.html

Expert PT or expert chiro eval/assessment might be helpful .
Often MDs will not even touch or palpate anymore for issues... they leave that to the PT persons..
Any PT for the neck at all yet?

Just want to bump this info up- and add links-
if nothing is showing on MRIs or other testing - And TOS had not been ruled in or out by any drs or PTs ( only very knowledgeable DRs /PTs know enough about TOS to "see" it many have bias and dismiss automatically)

useful sticky threads - TOS - PT/DRs - Therapy -
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread125577.html

I actually had the best recovery with a very good gentle chiropractor-
he used ultrasound, IF stim, Low level laser, massage, gentle adjusting, trigger point work....

None of drs have rx'd Pain reliving PT??
* Not weights or thera bands!*
mainly the modalities I mentioned above - to release the muscles so they can soften..& loosen.

Or has RSD/CRPS been looked into at all?
http://neurotalk.psychcentral.com/forum21.html

She does have referral to see PT on the 15th of this month. It just takes forever to get into see them. The geneticists we saw (on our own) did list CRPS as one of the main possibilities along with Connective Tissue Disorder. However her pediatrician dismissed this idea.

Her insurance is a HMO so we cant do anything without her PCP and right now she is convinced this is all in DD's head. She will not order any further testing and has referred her to Pain Management and PT. So I hope and pray one of the docs we are referred to will see something different and be able to convince her PCP to move forward in further testing. Thanks for the info and links looking them over now.

Do you have to stay with that PCP??
Can you search around for another that is more open to helping?

Have they specifically checked for extra cervical ribs? even small or partial can cause trouble.
Sometimes they are missed or not actually checked for by drs or techs..or imaging misses them..

[Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head.]

perhaps upper cervical chiropractic might help- sometimes during birth a baby can sustain a slight neck/shoulder injury to the area-
http://orthoinfo.aaos.org/topic.cfm?topic=a00077
www.upcspine.com
SIGN / SYMPTOM CHECKLIST-
http://www.upcspine.com/self.htm
If possible you can always go on your own for an eval of her C1 C2.
Many will give cash discount as billing ins is an added cost & time for the office.

We can request a new PCP but that takes roughly 6-8 weeks. Just leads to more waiting for dd.

One doctor she saw did mention and extra rib and had an MRI done but the imaging department said all was normal.

We are considering changing PCP if we do not get any help from Pain Doc or PT. It just adds more time to her waiting with nothing getting done. I am still working with geneticists who is trying to get us a cash price for testing he wants to do. At this point we are prepared to borrow anything we cant not cover ourselves. The geneticists is also having another radiologist/neurologist look over her MRI to see if there is anything that has been missed.

Are you requesting copies of all tests /reports for your own records?
it's just easier to have them in your own file if you decide to go outside Ins on your own..or for other opinions..
Especially with hard to dx cases... often there can errors in the drs records too.
So those might be good to get and review , and correct any misinformation, something vital may have been glossed over or missed completely.

If PCP report says anxiety based sx, that can be a big road block going forward..when others read that.

Update-
Had appointment with Pain Management doctor and once again a huge waste of time. It was obvious that he was in agreement with Pediatrician before he ever saw DD12. He too says there is nothing physically wrong with her and it is all physiological. So that was no help.

We are moving forward with genetic testing and paying the $945 out of our pocket. Hubby and I have talked alot of this situation and while we are unsure if what the pediatrician is saying is correct or not we just do not think enough things have been ruled out to make that decision. I guess I just feel like MRI and xrays do not seem to be enough to determine that there is no underlying cause for this pain that she has endured since she was 6!!!!

So geneticists is speaking with lab today to coordinate Dd's testing. Meanwhile she has first appointment with PT on Monday so I will update again after that meeting.