Chiari Online Support Group

Noob from NC

Hi everyone,

I recently underwent MRIs for my back and neck after more than 20 years of doctors telling me I was "fine", just needed to modify my daily activities. The results on my records state I have mild cerebellar ectopia, scoliosis, and several disc protrusions in the cervical and lumbar areas, reversal of the cervical lordosis, some degenerative disease, etc.

Like many of you, I have been diagnosed with fibro (2006), which may be accurate, but once I had that diagnosis, none of the docs wanted to do imaging tests. When I was in the military, my complaints were mostly chalked up to stress and a desk job. No one would do xrays or mri. Last year I applied for disability compensation through the VA, and they ordered xrays as part of the exams. Well, the xrays proved there was degenerative stuff. My new PCP ordered MRIs last month after I explained that I have suffered from muscle spasms, migraine, dizzy spells, whooshing in my ears, twitches, numbness, burning sensations, and erratic BP swings related to my posture. I won't go into the eye issues! I wanted to try some muscle relaxants, and this was the first time I had asked for any type of meds, so he took it seriously and ordered the MRIs. The results are posted above.

My dx is not Chiari, but from my research I see that I have a similar issue with the cerebellar ectopia, so I decided to just join you folks and see how others cope with this, maybe learn what my next steps should be. I am under VA care now for several conditions, and from my experience, they will not contact me about my mri findings (I accessed them online). I have no idea what I should talk to my PCP about or if I should request any referrals. PT would be nice!

I am only 43, but it seems like my body is falling apart, and I need to take care of my teenage daughter and my disabled mom. I just started graduate school, so I need my brain to function properly too. These issues affect my right arm and hand a great deal, and sometimes I lose control and mobility.

Okay, I feel a bit narcissistic talking about me so much! Thank you for hosting this support forum, and thanks to those of you who took the time to read this. I look forward to some great discussions!

Pam

1 Like

We're pleased to have you here, Pam. Thanks for introducing yourself :-)

I am new to this site and from NC as well - Uwharries Area. I was reading the introduction posts prior to writing mine and read yours and had to respond immediately.

If your cerebellar tonsils (can be left, right, or both) are herniated (aka cerebellar ectopia) 5mm or more you need to get the Chiari 1 Malformation diagnosis, because you have all the hallmark characteristics. Having this amount of herniation any doctor having knowledge of Chiari will diagnose it, coupled with your symptoms. If your cerebellar ectopia is 3mm - 4 mm you will likely have to push for the diagnosis; however, given your symptoms and the amount of time you have been dealing with them further validates a diagnosis. A Chiari diagnosis will be more accurate than Fibromyalgia and you will be taken more seriously, sadly (that you’re often not with Fibro), by everyone. I hope this information is helpful.

Thanks for your reply Dog-Nature-Lover! I agree that fibro gets ignored, and, worse yet, it will get the blame for every sort of pain, too. I know the difference between “fibro pain” and other types, and I think other sufferers probably do too. It took years to finally convince docs that I had arthritis. When I was in the military, they refused to take images of any kind, but I filed disability claims last year, and as part of my exams, they took several. Everywhere I had complained of pain showed degenerative disease on xrays. Furthermore, my recent MRIs prove that the damage is worse than expected, and , as you have written, much of the symptomology is consistent with Chiari. My report states “mild developmental cerebellar ectopia” among other things, and to me it sounds like the herniation is less than the cutoff for Chiari dx. My PCP is trying to get me a referral to a neurologist now because he admits that he is not able to help me with this.
Again, thanks for your post, sorry I took so long to answer!

I hope you find relief. Good luck.

I have not really been on here much since my initial posting, but I recently had a brain mri, and whattayouknow, my cerebellar tonsil on the right is 7mm below the foramen magnum. I will need to talk to my PCP again to see if he can make the diagnosis or give a referral. I was in this same situation 2 years ago, but the headaches are worse now (hence the brain mri) and this is the first time my report gave an actual measurement.