Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

[intoxicatedorange]

@Hip Thank you for making this thread! First post really helped me understand the reasoning for getting the MRI one way or the other.

Does anyone know if Dr. Bolognese is capable and willing to diagnose from Upright MRIs with flexion and extension, even though he seems to recommend supine? I'm doing my research before my next regular neurologist appointment because I'm going to ask her if she can order the imaging. I'd prefer to get whichever is most widely used so that I can get more than one opinion, which sounds like upright with flexion and extension. But Dr. B is the closest and most convenient of the CCI surgeons to me, at <1 hour drive away, so it would be nice if he can look at this type of MRI too.

 

[Hip]

Does anyone know if Dr. Bolognese is capable and willing to diagnose from Upright MRIs with flexion and extension, even though he seems to recommend supine?

I am not sure, but I know Dr B does sometimes order uprights as well as supines, when he needs to double check things. You might like to ask this question on Jen Brea's CCI Facebook group, where there is a lot of knowledge and expertise.

Uprights are much more expensive and difficult to find. Places which offer upright MRI scans shown on this map. Whereas a supine is relatively cheap and available at any hospital.

 

[intoxicatedorange]

I am not sure, but I know Dr B does sometimes order uprights as well as supines, when he needs to double check things. You might like to ask this question on Jen Brea's CCI Facebook group, where there is a lot of knowledge and expertise.

Uprights are much more expensive and difficult to find. Places which offer upright MRI scans shown on this map. Whereas a supine is relatively cheap and available at any hospital.

Are there certain criteria for the MRI facility besides just being able to have you in the upright position? I just google searched upright MRI in new york (I live there) and a few locations came up in new york but none were on that map you linked. I don't care about the cost at this point, if there's a chance it could lead to a diagnosis of something that has effective treatments I'd give any amount of money for that... Thanks for linking the FB group link, I didn't know it existed.

 

[Hip]

Are there certain criteria for the MRI facility besides just being able to have you in the upright position?

Not that I know of.

I just google searched upright MRI in new york (I live there) and a few locations came up in new york but none were on that map you linked.

Upright MRI machines are rare, are you sure the locations you found in NY offered upright MRIs?

The map was complied by a member of the FB group.

 

[intoxicatedorange]

Not that I know of.
Upright MRI machines are rare, are you sure the locations you found in NY offered upright MRIs?

The map was complied by a member of the FB group.

Yes, unless I'm missing something or this is some kind of scam, this seems to be a specific practice with several locations in NY and FL:
https://www.standupmrilocations.com/

I was surprised that they have so many locations if it's such a rare thing, which is why I'm wondering if there are any other specific requirements for the machines...

 

[Hip]

Yes, unless I'm missing something or this is some kind of scam, this seems to be a specific practice with several locations in NY and FL:
https://www.standupmrilocations.com/

I was surprised that they have so many locations if it's such a rare thing, which is why I'm wondering if there are any other specific requirements for the machines...

That's a hell of a lot of locations in NY and Florida! I've passed the info on to the person who compiled the map in the FB group. If you come across any other locations, please post.

You are better off asking your questions on the FB group, as people there know more about CCI than I do.

 

[intoxicatedorange]

That's a hell of a lot of locations in NY and Florida! I've passed the info on to the person who compiled the map in the FB group. If you come across any other locations, please post.

You are better off asking your questions on the FB group, as people there know more about CCI than I do.

I know, that's why I was skeptical when I first found the site! But looking through it, the information they have on the site sounds legit. The examples of why you might need upright MRI on the "case studies" page even includes a chiari example. Now that I think about it, I've also seen one of their locations in person in manhattan back when I was healthy, didn't think much of it at the time but I remember it now.

The MRI machines they have are only 0.6 tesla, so not very powerful, perhaps that's how they're able to have so many locations.

 

[Hip]

Dr Gilete often refers patients to the Medserena Clinic in London for upright MRIs. So you can check to see if there are any differences between the upright machine in London and those in NY/Florida.

 

[Bowser]

I consulted Dr. Gilete with supine MRI on flexion and extension. My measurements were borderline and was diagnosed with "possible" CCI and AAI. It seems only my BDI was borderline pathological and everything else was normal.

On Skype he explicitly said that I would need an upright MRI to confirm the diagnosis, as the measurements were likely to be more severe on that.

So I guess in general Dr. Gilete does accept supine MRIs, but if your measurements are borderline you'll need an upright MRI to confirm. But I guess if your measurements were severe enough on the supine MRI itself you could be diagnosed with just that.

 

[Oberon]

Yes, unless I'm missing something or this is some kind of scam, this seems to be a specific practice with several locations in NY and FL:
https://www.standupmrilocations.com/

I was surprised that they have so many locations if it's such a rare thing, which is why I'm wondering if there are any other specific requirements for the machines...

They are legitimate, I went to one of them in New York. With that said the one I went to screwed up my MRI and did not do the scans as prescribed by Dr. Gilete.

They had no idea what to do for the rotation and didn't take the correct scans required so it ended up being a big waste of time and money for me.

Probably better off going to a clinic that other patients have had success with or at the very least be extremely cautious they understand exactly what's required.

 

[intoxicatedorange]

They are legitimate, I went to one of them in New York. With that said the one I went to screwed up my MRI and did not do the scans as prescribed by Dr. Gilete.

They had no idea what to do for the rotation and didn't take the correct scans required so it ended up being a big waste of time and money for me.

Probably better off going to a clinic that other patients have had success with or at the very least be extremely cautious they understand exactly what's required.

Can you share more details of what you mean, what's the rotation you're talking about and is that different from the normal flexion and extension? And which NY location was it out of curiosity? Maybe one of the other NY ones would be better... I would have a hard time getting to any location outside of New York right now.

 

[Oberon]

Can you share more details of what you mean, what's the rotation you're talking about and is that different from the normal flexion and extension? And which NY location was it out of curiosity? Maybe one of the other NY ones would be better... I would have a hard time getting to any location outside of New York right now.

Flexion and extension was standard so they knew what to do, but rotation is something according to the technician they have never done before. I assumed myself that rotation was only turning your head left and right and insisted they do it.

Unfortunately they only took sagittal cuts for my rotational scans (the type of mri picture) when they really needed to take sagittal and axial cuts. Without axial cuts according to Dr. Gilette's office they can't rule out AAI so essentially the trip was a waste of time money and energy for me.

I will PM you the clinic I went to.

 

[JenB]

My diagnoses are ME/CFS/EDS/CCI, AAI, and TC. Dr. B didn’t accept me into his practice, Dr. Henderson doesn’t take Medicare. I did send my imaging to Dr. Gilete who confirmed the diagnosis of CCI/AAI. When I met Dr. Patel I knew he was the one for me. He doesn’t do invasive traction but I had a positive response to home traction. My CXA was very pathological at 125°. Quite a kink in my medulla. Based on my years of disability (18), my age (55), and the severity of my pathology that is why I decided to have surgery. I’m a PT and I work closely with a PT in Charleston who has EDS named Susan Chalela who treats lots of Dr. Patel’s patients.

How did Dr. B not accept you with a 125° CXA??

 

[JenB]

@Hip Thank you for making this thread! First post really helped me understand the reasoning for getting the MRI one way or the other.

Does anyone know if Dr. Bolognese is capable and willing to diagnose from Upright MRIs with flexion and extension, even though he seems to recommend supine? I'm doing my research before my next regular neurologist appointment because I'm going to ask her if she can order the imaging. I'd prefer to get whichever is most widely used so that I can get more than one opinion, which sounds like upright with flexion and extension. But Dr. B is the closest and most convenient of the CCI surgeons to me, at <1 hour drive away, so it would be nice if he can look at this type of MRI too.

He will accept your upright MRI.

 

[hezza]

My cognitive envelope has always been my largest if I could be supine for my POTS. But my deficits have included word finding, only being able to focus on one thing at the time, inability to listen to live television. The other night I was listening to music while dictating a note. That’s huge! And I can listen to live television with commercials!

This is so cool! So happy for you! I remember coming home from my 2nd manual traction & being able to pay bills online while my husband was watching tv That was earth shaking. I generally have to put earplugs in to just be able to lay there while he’s watching.

 

[Oberon]

Flexion and extension was standard so they knew what to do, but rotation is something according to the technician they have never done before. I assumed myself that rotation was only turning your head left and right and insisted they do it.

Unfortunately they only took sagittal cuts for my rotational scans (the type of mri picture) when they really needed to take sagittal and axial cuts. Without axial cuts according to Dr. Gilette's office they can't rule out AAI so essentially the trip was a waste of time money and energy for me.

I will PM you the clinic I went to.

As a follow up to this I decided to go ahead and let Dr. GIlette only rule out CCI, but it turned out the images were of such bad quality he was unable to do it, even with the correct cuts.

For anyone getting scans please ensure you get it from somewhere that has previous experience with other patients. I am out close to a $1,000.00 from this and hopefully this message helps someone from not repeating my mistake.

 

[Hip]

For anyone getting scans please ensure you get it from somewhere that has previous experience with other patients. I am out close to a $1,000.00 from this and hopefully this message helps someone from not repeating my mistake.

Sorry to hear that you lost all that money, Oberon. It must be quite annoying.