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Opinions please - possible Chiari 1?
Hello Everyone,
I'm new here and was hoping that maybe some of you could take a look at this pic from my brain MRI from 6 mos. ago and tell me if you see possible Chiari 1. I have had most of the characteristic symptoms off and on, varying in degree, for the last 2+ years. They appeared out of the blue (no trauma) when I was 43. I've been to 4 neurologists who have ruled out all the usual suspects like MS, lyme, lupus, fibro, vitamin deficiencies, diabetes, etc. No one has ever mentioned Chiari, but I came across this as a possibility just recently and if confirmed, would explain a LOT. Of course, like many other people here, the docs have told me I'm just stressed or that maybe I had idiopathic partial transverse myelitis (which keeps recurring? doesn't make sense). I was diagnosed with mild cervical stenosis, but all 4 docs tell me that alone doesn't explain my symptoms. I have sent my MRIs to the Wisconsin Chiari Center for review but was told Dr. Heffez is currently out of the office so I won't hear back for a couple of weeks. I would appreciate any thoughts while I try to be patient waiting for his assessment. To my untrained eye, it looks to me like there might be some crowding and tonsil descent past the foramen magnum, but only slightly. Thanks -- this seems like a very supportive community! So glad to have found you.
I'm new here and was hoping that maybe some of you could take a look at this pic from my brain MRI from 6 mos. ago and tell me if you see possible Chiari 1. I have had most of the characteristic symptoms off and on, varying in degree, for the last 2+ years. They appeared out of the blue (no trauma) when I was 43. I've been to 4 neurologists who have ruled out all the usual suspects like MS, lyme, lupus, fibro, vitamin deficiencies, diabetes, etc. No one has ever mentioned Chiari, but I came across this as a possibility just recently and if confirmed, would explain a LOT. Of course, like many other people here, the docs have told me I'm just stressed or that maybe I had idiopathic partial transverse myelitis (which keeps recurring? doesn't make sense). I was diagnosed with mild cervical stenosis, but all 4 docs tell me that alone doesn't explain my symptoms. I have sent my MRIs to the Wisconsin Chiari Center for review but was told Dr. Heffez is currently out of the office so I won't hear back for a couple of weeks. I would appreciate any thoughts while I try to be patient waiting for his assessment. To my untrained eye, it looks to me like there might be some crowding and tonsil descent past the foramen magnum, but only slightly. Thanks -- this seems like a very supportive community! So glad to have found you.
Thank you so much for your post and for welcoming me here. I've been reading posts on this forum all week since I found it and finally decided to join in since everyone seems so helpful and supportive.
I agree that more than one opinion is a very wise idea. We'll see what this first NS says and go from there, I guess.
I so appreciate hearing advice from those who've been diagnosed and have been through all the hoops to get there.
I agree that more than one opinion is a very wise idea. We'll see what this first NS says and go from there, I guess.
I so appreciate hearing advice from those who've been diagnosed and have been through all the hoops to get there.
Thank you so much for your post. Oh yeah, tingling and numbness in my extremities were my first symptoms, with many others following within hours/days. Crazy stuff. So, if you don't mind me asking...did you have surgery or are they monitoring? How long have you had symptoms? I haven't read much yet about all of the other "friends" except syrinx, so I will do that as you suggest. Thanks again for your input and support! It means the world to know there are others that understand.
Yes, I'm not currently a patient there. They only ask that you fill out a very brief questionnaire and send any MRIs for his review. There's no cost for the review and they'll let you know if they think they may be able to help you. I figured what have I got to lose? Google: Wisconsin Chiari Center -- they're in Milwaukee. Lots of great info on their website. Great reputation. I also found highly recommended chiari centers in NY, OH, and CO, but I live outside Chicago so this one makes the most sense for me. I'm new to all of this, too but this is the most promising possibility I've uncovered yet so I'm running with it until it's ruled out by an expert. Good luck, please check out these centers, and keep us posted.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It does look crowded....and most Drs may say the length is not enuff to classify it as Chiari....HOWEVER...Chiari is the malformation of the skull not the herniation....so more testing is required at this time...a CINE MRI to check for a CSF obstruction, and MRI's of the complete spine to rule out disk issues and tethered cord, Syringomyelia....then testing to rule out related conditions like ICP, POTS, EDS, CCI, sleep apnea....
See a few true Chiari specialists to compare what you are told.....educate yourself so you know what to expect.....
See our list of Drs to use to research Drs...and be advised you may need to travel .....
and last, know you are not alone.
Boy it sure looks crowded in there doesn't it. I am NO DOCTOR whatsoever but i agree it sure looks like it could be chiari...maybe even Chiari 0. Not sure if you have any tingling going on but mine looked similar to yours and my tonsils were pushing on my brainstem...causing tingling.
. I have not found a NL that really knows too much about chiari. Seems like they dismiss it a lot. My guess is one Dr. Heffez sees it you will get more answers. But the waiting is SOOOO hard. I was so distraught as i waited to see my NS and find out what was really going on. The whole time I thought hmm..it's probably not too bad i mean i was 42 when i felt my first symptom. Each person's story is different and yours will be too. Research all you can about Chiari and all of it's sidekick friends that like to join the fun (EDS, POTS, Tethered Cord, SYRINX). Your knowledge will truly help when you finally do talk to the NS. Take a deep breath if you can and stress really causes symptoms to increase. Good luck and keep us posted. God Bless.
. I have not found a NL that really knows too much about chiari. Seems like they dismiss it a lot. My guess is one Dr. Heffez sees it you will get more answers. But the waiting is SOOOO hard. I was so distraught as i waited to see my NS and find out what was really going on. The whole time I thought hmm..it's probably not too bad i mean i was 42 when i felt my first symptom. Each person's story is different and yours will be too. Research all you can about Chiari and all of it's sidekick friends that like to join the fun (EDS, POTS, Tethered Cord, SYRINX). Your knowledge will truly help when you finally do talk to the NS. Take a deep breath if you can and stress really causes symptoms to increase. Good luck and keep us posted. God Bless.
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