Testing for Craniocervical instability in UK

[KevinM]

I am asking for my partner, who I think it would be worth having tested for Craniocervical instability or related conditions like Chiari though I think that is less likely. But if we do get a scan it would be foolish to limit it to one specific condition.

I don't know what the chances are that she has craniocervical instability, but my suspicions are strong enough I think it is worth testing for and if necessary paying for it privately.

I responded to a tweet by Jennifer Brea Jen Brea's tweet and got a reply from someone in the UK mentioning a company called Medserena that does open and upright MRI scans who should be able to do what is needed. I have asked questions about what is appropriate to research before approaching them but I feel like I am running blind.

The following are the questions I asked of the original person who mentioned Medserena but I'm guessing they've been too ill to have the energy to reply.

"Did you speak to a Doctor beforehand about cranio cervical instability? Was that your NHS doctor or a private one? If private how did you find the private one? If NHS were you able to get them to give you advise?"

"Or did you just find Medserena yourself and pay with a self referral?"

"With Medserena did they review the results for you and were you able to make it clear what you were concerned about and what to be looking for? Were you satisfied with the way they reviewed the results? If not did you go elsewhere and how did that work?"

"Did Medserena make the full results available to you so that you could get an alternative analysis of the images?"

Medserena have a facility in Manchester in the UK, which will be reasonably accessible to us in Sheffield. So we would go there.

I would like to know what others experiences are in the UK, are people aware of alternatives to Medserena? Does anyone have a ballpark figure of how much the scan and analysis will cost. At the moment I know nothing.

 

[Pedro]

I am asking for my partner, who I think it would be worth having tested for Craniocervical instability or related conditions like Chiari though I think that is less likely. But if we do get a scan it would be foolish to limit it to one specific condition.

What are her symptoms? In the consultation process Medserena will assess her to decide the best path.

I don't know what the chances are that she has craniocervical instability, but my suspicions are strong enough I think it is worth testing for and if necessary paying for it privately.

At the current time, if you go through the NHS, their typical cervical spine MRI will only go to C3 in the axial view. And they don't do anything like extension or flexion views as standard. They will usually report tonsillar descent if it's present. An NHS Brain MRI will usually not go low enough to properly investigate the cranio cervical junction. But I have seen them comment on tonsillar descent.

I responded to a tweet by Jennifer Brea Jen Brea's tweet and got a reply from someone in the UK mentioning a company called Medserena that does open and upright MRI scans who should be able to do what is needed. I have asked questions about what is appropriate to research before approaching them but I feel like I am running blind.

Medserena do an MRI scanning package called their Craniocervical junction package. It's specifically designed to investigate Craniocervical instability and whiplash type accidents.

The following are the questions I asked of the original person who mentioned Medserena but I'm guessing they've been too ill to have the energy to reply.


"Did you speak to a Doctor beforehand about cranio cervical instability?

In the NHS yes. I am fortunate to have a great GP but they were uncertain as to how to proceed with investigating my symptoms. So I proceeded myself by self referring to Medserena.

Was that your NHS doctor or a private one? If private how did you find the private one? If NHS were you able to get them to give you advise?"

"Or did you just find Medserena yourself and pay with a self referral?"

If you contact Medserena they will send you the paperwork to fill in. You can self refer. Your request then goes through their MDT very quickly and they will recommend or revise what they think you need.

"With Medserena did they review the results for you and were you able to make it clear what you were concerned about and what to be looking for?

Medserena will write you a much more extensive report than you will get from the NHS. The one got back was very informative as to what my issues are. It will cover Chiari if this is present. Both the referral process and the Radiographer will ask you what the issues are. This is something that doesn't happen well enough in the NHS. I know exactly why you ask this question because it was one of my major concerns before paying for the service, especially because I'd been ignored while trying to get investigated before. After the event I was pleased with the service.

Were you satisfied with the way they reviewed the results?

Yes. After 2.5 hours of MRI scanning and getting the report back after about 5 workings days it was much more informative than several years of messing about in the NHS.

If not did you go elsewhere and how did that work?"
"Did Medserena make the full results available to you so that you could get an alternative analysis of the images?"

Yes. I walked out of the door the same day with the entire set of MRI imaging on CD.

Medserena have a facility in Manchester in the UK, which will be reasonably accessible to us in Sheffield. So we would go there.

That is where I went for my scanning. The Radiographer there was very helpful and I could tell they were used to dealing with all kinds of patients.

I would like to know what others experiences are in the UK, are people aware of alternatives to Medserena?

I think there's an upright MRI scanning centre in Birmingham and one down in Bournemouth I think. They appear easily on Google.

Does anyone have a ballpark figure of how much the scan and analysis will cost. At the moment I know nothing.

Probably best if you contact them for a quote.

After you've got an upright MRI report it will of saved you a massive amount of time and effort than trying to get the right imaging through the NHS. But then, if there's anything wrong in a craniocervical way, you may have a real battle on your hands as very few NHS consultants want to look into the matter, or do anything about it. They know about it, and are aware of much of what's being said about it, but for some reason don't want to be involved in it. The US is much more active in research and comment about it.

I probably should also say that I have no affiliation with Medserena other than being a customer of theirs.

 

[Not dead yet!]

Probably best if you contact them for a quote.

I'm not sure why you wouldn't share whether it cost you $50 or $5000 in just round figures? Nobody's asking you for a financial statement, just how much it cost you to do it. We all have budgets, and if it's out of range, then it is.

 

[Susana]

I am interested to know if anyone has had this type of scan ,discovered they had craniocervical instability and had treatment for it. I'm asking on behalf of my son who is often bedbound with constant vertigo and dizziness, frequent severe headache but whose neurologist has no solutions for him. I've just read the article by Cort on the website. Thank you.