Upright/vertial/weight-Bearing Mri For Diagnosis Purposes?

[martiz]

Hi Group,

I am being sent for an MRI to check for Chiari Malformation and I have been researching recently that this is best done vertically or weight-bearing rather than lying down.

Since Chiari is sometimes misdiagnosed as CFS or POTS. I would like to have the right test done (and so I don't have to pay two copays). I did have a neck injury about 6 months before I developed ME/CFIDS.

Is this the best way to check for Chiari? Is it hard to get this done vertically? Has anyone had Chiari diagnosed by a supine MRI?

Should I push for this or just let them do a regular MRI?

http://en.wikipedia....ri_malformation

http://www.chiarione.org/chiari.html

http://www.huliq.com...ri-malformation

Marti

[bellgirl]

I would go for the vertical instead of the horizontal, if you can, because people on this site have said that they feel gravity would have diagnosed them with Chiari. Is it more expensive to get it this way? Just curious...If you are ruling out Chiari, it makes sense to me, (as a retired nurse)

[HopeSprings]

I attempted to have an upright MRA (to look at bloodflow to brain), but when I got there they had me sitting, but quite reclined. I was like what is the point of this, I might as well be lying down. They said they don't get good images because people move more when upright. Let us know what happens - I'll be curious to know if you end with a true upright study. I also had a neck injury shortly before the beginning of many of my POTS symptoms. I think it's definitely worth looking at. Maybe you could ask the radiologist (or tech) - I find they often know more than the Dr's ordering the tests.

[sue1234]

Naomi, that makes sense that we patients would move more sitting upright. I hadn't thought of that.

I am like a few of you. Before POTS hit, I had begun having neck crunching. I now know I have stenosis, but wonder how my brain sits and things flow while upright. Probably not as smooth as it should!

[martiz]

I have done a little research and there is a vertical MRI facility in Dallas. Baylor has the regular tunnel supine.

I am going back to Dallas June 2 to see Dr. S so maybe I can wait and have it done there.

I am willing to wait to have it done right. My opinion is that once you get a negative test in your file, doctors don't want to retest.

Thanks for responding.

Marti

[issie]

I think if mine had been done upright with EDS - it would have been a positive for Chairi 1 as with lying it's at 2mm - it has to be at 3mm for it to be considered Chairi 1. I would wait for the upright.

Issie

[martiz]

Having done a boatload of research, this is what I have found:

There is a facility in Houston that does weight-bearing or open mri. I have spoken to them and they do test for chiari malformation - sitting/weight bearing (not standing). We will see how "sitting" I am or if it is more recumbent. I got the name of a couple of docs and one of them had a cancellation so I see him on Friday. I will keep you posted.

Another test (possibly better) than a weight bearing is the CINE MRI where they measure the CSF flow to your brain. I have the name of another doc that sends patients for this. I am hoping this doc will send me for that one too. I am almost considering cancelling my appt with the otolaryngologist on Tuesday.

Bad thing is there is an EDS Support group meeting this Saturday that I wanted to go to but can't afford gas to go Friday, Saturday and Tuesday. Well, one thing at a time, I suppose.

I will keep you posted.

Marti

[bellgirl]

Where in Houston, if you don't mind me asking Marti? My son lives and works there; I could visit him and get that done. The CINE MRI sounds interesting...I've always thought I have a CSF leak, coming out of my eyes, but my neurologist says it would come out of my nose or ears. The last time I checked, they are ALL connected...my eyes constantly tear crusty liquid, that isn't normal tears, and every time I bend over they come pouring out...just wondering. Thanks, Kim

[martiz]

Hi there,

The facility is http://www.altushms.com/about-us/contact-us.html. The two names they gave me were shirzadi - 713-777-4122. Kraus 281 870=9292. Shirzadi is a neurologist and I haven't looked up Kraus.

I have an appt with Shirzadi on Friday but will cancel if Altus can't take my insurance. Supposedly, they have a financial assistance plan to help but I can't afford that either - well, we'll see. If I do cancel, I may go ahead with a neurosurgeon and see what type of MRI's they do for Chiari. Either Dr. Parrish or Dr. Dong Kim.

The test is weight bearing - sitting. I have no idea who will/can do the CINE MRI. Haven't started researching that.

I have read a little about CSF leaking - not enough to give direction but I say - go with your gut. Most likely, you know what it is.

Marti