Is it CM I?

[przemekbe]

Hi all,

I am scheduled for 3T MRI as my old one (2014) is not very detailed. I've had CM like symptoms since 2011. Could anyone please take a look at 3 examplary scans which I believe may be conclusive?

https://www.dropbox.com/sh/moxajw5pewr4kf8/AACHWwuMhW4v5bZBgVgrzZuWa?dl=0

thanks,
Przemek

[selmaS]

   Here is the States I would use The Chiari Insitiute, Or Dr. Bolognese, Dr Oro...Dr Henderson for a review.....any one of them should be able to offer help/insight.

[przemekbe]

Maybe there are some dr-s or clinics/institutes that do MRI scans reviews? That doesn't restrict me except for the charge if that is pricey.

[selmaS]

  Well a full on kinking could cause compression of the brain stem and cause black outs and issues with sleep apnea etc.....

Hmmmmmmmmmm yeah unfortunately I do not have other members from Poland...but with your help we could start a list for any we may get in the future??

It does look tight yes...and length of herniation is not as important as some of the other issues like the brainstem being kinked....or compression of it and the spinal cord...along with obstruction to CSF flow...so a CINE MRI is needed...

Just as a lumbar MRI should be done...a thoracic MRI should be done too....what many of us refer to a full spine MRI...as a syrinx can form anywhere in the spine but many Drs only look to the cervical spine since it is  the weakest area and most ikely to suffer a syrinx due to injury.....

Most Drs here that are true Chiari specialists will review your MRI and possibly consult with your Drs....

I know most NS will do the decompression but not all of them know enuff about how it can cause a domino effect due to related conditions. And this can make the patient feel worse post op..and then think the surgery failed when in fact it could be a related condition causing the issues.

[przemekbe]

Ok. You mean not much of a descend, but it looks stuffed? I am going to have lumbar spine MRI too. "

Kinking" of the brain stem - what might that cause?

I am Poland based, so I guess there is no single renowned Chiari expert available. Of course many NS do decompressions. Maybe you know individuals or clinics that do reports for sent scans? I'd send them my new scans.

[selmaS]

  Well that is the part I am not sure of...Chiari is the malformation of the skull, not the herniation and yes you look corked up by the cerebral tonsils...but I do not know if it is due to the skull being too small....

You even seem to have some kinking of the brain stem....it is very slight...but there.

Yeah we were born with Chiari too...but that does not mean we have less pain bcuz they say that...the biggest problem is Drs do not know how Chiari can and does affect us....Chiari is not rare BUT Drs well informed or experienced are.

[przemekbe]

Thanks Selma. Yes, I know you are not professionals and yes I have a MRI and visits scheduled. At this point it is my curiosity. The syrinx is evident that's for sure. I am not able to assess myself if tonsils are herniated. Does it look like CM I? My story is similar to many people here. Tons of appointments and hearing things like "it is not serious", "anxiety", "syrinx is something I was born with" etc. My symptomps make me believe there is a cause. For the first time I heard "maybe it is Chiari" which is not what I wanted to hear.

[selmaS]

  Hi and welcome to the Chiari forum.

Not being medical professionals and only going on what we learned in our own Chiari journey can we make any comments on your MRI.

First let me say if these are old then changes  may have taken place...which I know is why you are going to have new ones done.

Next, on the MRI to the far right it looks like you had a syrinx....

The biggest problem even when the MRI shows the problem of Chiari or a syrinx most Drs consider them an incidental finding...so we need a true Chiari specialist to work with us.

Let me know what area you are in so I can give you a list of Drs to research