Limbo Landers MUST READ! You may have this ...

[Brittan]

I recently have been diagnosed with Chiari 1 Malformation (CM). All the symptoms you describe is included in CM. A lot of neuros are not educated in this, neither are radiologists it often overlooked by one or the other or both. It can be diagnosed via an brain MRI - you can even diagnose it yourself ... it is very easy.

I ran into this info on CM before I was diagnosed and I thought if I had that they would definitely see it in the mri so I ignored it thinking it was unlikely ... I was wrong. So please do not overlook this info and the possibility of having it until you look at your mri (based on video below will help you distinguish if you have it) or post it to the fb group below for review.

You can view the video here about how to see if you have it: https://www.youtube.com/watch?v=I0f9e3pU6to

If you are unsure about doing it yourself you can join a Facebook chiari group I'm in and post the brain MRI and others are more than happy to help you with saying yeah or nah. The group is:

**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

Here is a video on some of the symptoms: https://www.youtube.com/watch?v=YyF3HVgHpCs Also, with CM you can have a Positive Romberg sign and you can have tremors as stated in 1st video above.

My neuros keep going over all the same conditions such as listed in the above (main) post but nothing until they confirmed CM. Seriously check it out. When I looked back at old MRIs dating back to over 15 years ago I had CM at that time but was never diagnosed.

To bad we can't upload pics or I'd upload a photo to show you how to rule in or out CM. The group above is great to diagnose it - it is very easy with MRI. Seriously do not rule this out until you view your MRI.

[jreagan70]

Hi Brittan:

It's good to hear that you were able to get a diagnosis. It's surprising that it took your neuros so long to find a Chiari malformation because CM is not that far down the list of possibilities for your symptoms and it's not hard to find when a neuro is paying attention to the evidence. That's why it came to mind for me for one of your earlier threads:

Hi Brittan:
...it would be unusual for spinal cord damage from your accident or some other condition to be overlooked or downplayed, but subtleties are sometimes missed. It also makes me wonder if something like a mild Chiari malformation is being overlooked.

So thanks for reminding everyone that, when things don't make sense, it's time to go back and look at all the test results and other evidence again. I hope your neuro will be able to come up with a management plan that might make your life a little easier.

[Brittan]

That is exactly why I am pointing it out to others. Many of the MRIs on google and other website show them extremely distorted and enlarged so many dismiss it thinking well how can an neuro or a radiologist miss it ... well the majority of the time they do or they will not even tell the patient it was on the MRI report. I have bounced around from neuros hoping to find the golden egg among them ... even still don't think I did. Just glad the radiologist found it.

I even switch MRI imaging companies and I finally found an awesome one. They have found several other conditions other imaging places did not (just in the past 2 months alone) - another recommendation avoid local hospital imaging places because everything has come back normal for years and now since I switched imaging centers things are finally getting diagnosed.

I dismissed it because I thought no way I have it but yet here we are. (Thank you btw for bringing it up earlier to me in a previous post, I just wish I dug a little deeper). Because diagnosing by mri is easy peasy and if someone else can see how easy it is to rule it in or out via mri at least they know if they do or do not have it. In the video about Overview on CM - it says how to diagnose it. It is simply drawing a straight line from one bone to another ... see easy.

Since this was just one more diagnosis added to my list of illnesses I want others to be aware. 15 years to diagnose this when it was clearly on my MRI 15 years ago - point being check your own MRIs.

So I need to get the CM taken care of then my spine (osteoarthritis), levoscoliosis, occult tethered cord syndrome then I need to follow through with further testing for the white matter near my ventricles of my brain (no infarct or mass so need more tests not tia or stroke) - lol, all this from a decent imaging place. Woop woop.

Thanks again Jreagan and I do hope others check their mri for CM.

[Brittan]

Also the facebook group I'm referring to is called "Chiari Is For Real" for the link view my profile under additional links. When you join this group you can post your mri and the members are more than happy to help say yeah or nay - it is a very simple process to diagnose. Or alternatively watch this youtube video and it will tell you how at the beginning of the video. https://youtu.be/I0f9e3pU6to

Just fyi for your information and good luck to all.