I wrote a big thread in December discussing my somewhat complicated situation. I have not yet got an ES diagnosis but having spoken to people here, it seems dead on I have it.
My situation was complicated because I am also perusing jaw surgery. After advice here, I had decided to have the CBCT scan I needed for that, which would hopefully also show the elongation of the styloids which I could then take to an ES surgeon separately. While it wouldn’t show any vascular impingement of which I think there may be some going on very slightly, it would at least show the elongation of the bone itself.
In my last thread, there was a lengthy discussion surrounding the ‘to excise or not to excise’ debate because my symptoms are very mild, and nothing like a lot of the other members here suffer from.
Given that I’m doing this quite an unusual way (getting a scan for something else and then using the scan) I’m a little confused about how it will play out.
I’m going for the scan on Friday and will then have it in my possession with a copy also going to my maxiofacial surgeon.
Given the relative obscurity of ES and the fact most doctors and surgeons haven’t heard of it, is the radiologist or jaw surgeon likely to even notice it’s there? Will I myself be able to view the scan and see it? And if so, how will I know it is elongated?
It’s likely going to be some time until I can get in to consult with an ES surgeon is the thing.
Many of our members have been diagnosed via CBCT though it’s not the type of CT scan most ES surgeons prefer. They want a CT of the head & neck areas.
The styloids can be seen on a CBCT especially if they’re elongated. You can have the ordering physician request that the CBCT be evaluated for elongated styloids as well as for your jaw issue. This is something that you won’t be able to ask for at the time of the scan. The request has to come from the doctor. Radiologists typically only comment on what the doctor has asked for & don’t include extra info because they don’t generally look for things “outside of the box”.
If your styloids are elongated, you should be able to see them. You can also upload your image onto this forum, & we can give an opinion if that would be helpful.
So I’ve paid privately for this scan having been referred by my surgeon. Is it common to get the result there and then? Are you given them on a disk or something that you can view at home?
I think even paying privately for the scan you’d be unlikely to be told the results straight away, I think you’d have to be wait for the report to be sent back to the referring doctor. In the UK copies of scans don’t seem to be given as readily as in the US, but it’s worth asking for one- maybe one of our UK members who’ve had private treatment could comment on that, like @PatientD ?
I was due to have my scan done at Cavendesh Imaging on Harley Street, but the surgeon didn’t tell me that there were other Cavendesh sites around the country.
I looked on the website and there are several main sites, and then some ‘satellite’ sites where another company called CT Dent does the scan but are affiliated with Cavendesh.
I rang up today to ask If I could instead have the scan at a satellite site, which does CBCT for the company and is only 15 minuets away from me. They said that they use different software so it would be best to have the scan done in London, but it seems kind of insane to pay over £100 on train tickets for a five hour journey when there’s a site right next to me. Hopefully I can swap!