Double Sided Success(?) With Cone Beam CT

Hello to all my fellow support group sufferers (ES and other ailments),

I have been inactive on this site for awhile, during which I was concentrating on one of my other conditions, which took me on a 4 month roller coaster ride of frustration and partial success.

As the title suggests, it involves a Cone Beam CT (CBCT) scan, which many of us had a discussion about a few months ago. It took me some time to get access to the actual scan (which I later found out was the EASY part of the journey), luckily I have a sympathetic and altruistic dentist.

I have attached the report for the specific wording related to ES.

The Good Side

While I was not seeking the CBCT for my ES, (since I have 2 previous CT scans documenting it), it did reveal some new information, mainly that the Styloid Processes are not as long as previously thought and that both Stylohyoid Ligaments are partially calcified and segmented. Pretty much what I believed from the beginning given my other condition involving calcification. This obviously has implications for any future surgery considerations, since the previous scans only mentioned the Styloid Processes as the culprit.

The Bad Side

Initial post exam screwups by the Maxilofacial clinic delayed progress by almost 2 months. The doctor did the scan in house (at a cost of $350) rather than send me to a specialized imaging center (same price to me, but the imaging center would get the money). Rather than refer me to a radiologist that could interpret the CBCT, he chose to write his own report (took about a month and a half) which wasn't detailed enough to mean anything to my regular doctors. When he finally referred me to the radiologist (via the imaging center that should have done the scan in the first place) he told them the wrong area of my neck to comment on, so so I had to convince them to do it again. Keep in mind that the doctor had already charged me an additional $350 for his exam fee ($700 total so far), plus I paid another $99 for the radiology report (money well spent though).

At this point, it had been nearly 3 months since the scan was taken, but at least I was making progress (or so I thought). After a couple of weeks and no word back from anyone, I got a hold of the the technician at the imaging center (she just got back from holidays), who informed me that the revised report was sent to the Maxilofacial clinic 2 weeks prior to this. I thought I would blow a gasket, especially since in the meantime I had convinced my already skeptical Family Doctor to get the local radiologist to report on it. That backfired big time as the radiologist (obviously out of his depth) refused to comment on "such a poor quality image". That was the last nail in my "Hypochondriac" coffin as far as the family doctor was concerned.

So now I have an in depth report on my conditions but no one to interpret it in Lay Terms, as most family doctors don't understand the medical jargon and are refusing to refer me to a specialist that does understand it (including the ENT who originally treated me for ES, as the 6 month "no referral needed follow up visit" grace period had expired. The fact that I bypassed the traditional medical system and went through the Dental system only seemed to make things worse with them, plus my extended health insurance won't cover it since the costs were "dental" related and my plan doesn't have strong Dental coverage. At least I know I have something resembling a diagnoses.

In Summary

If you can swing a CBCT scan, go for it, just be sure it is done at a qualified imaging center and make sure you have access to a radiologist familiar with CBCT scans that can write you a report.

Be careful what and how you say to a doctor, because they get very defensive when a patient "knows" more than they do.

Good luck to everyone, and a Happy Thanksgiving to all the Canadian members.

Red Pill

213-CBCTScanReport.pdf (743 KB)