stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[THackley]

Hello all! Just thought I'd stop in and say hi. I'm new to the forum and have CM I with 7-8 mm tonsils. Also, my cervical spine is completely reversed! HA... you'd never know it from the outside but boy is that strange. So anyway, I have degenerative disc disease in my thorasic and lumbar spine too. I vomit A LOT, have ridiculous headaches that come on in a flash and all of the numbness and crazy tingling. Also, I don't know it it's common but I have serious bouts of burning. Like really SUPER intense burning; almost like someone is holding a cigarette on you. Anyone else have that? What about strange itching sensations but not being able to pin-point them? I feel like a crazy person when I describe my symptoms to my Dr. and maybe he thinks I AM a crazy person. Who knows..... All I know is that I'm getting crappy care and don't have a whole lot of options in my small town. :( Oh and Social security is a joke!

[tee_ya]

Hi, I have recently been diagnosed with a 15 mm cerebellar tonsil herniation that is consistent with Type 1 Arnold Chiari Malformation  I also have Super Canal dehisence in both ears.  Needless to say I am in rough shape! I have extreme vertigo, pain in the back of my head and I walk like I am drunk..I now have a cane to help me with my balance. My vision is messed up and I have bad hip pain..umm is the hip pain related to this>> I don't know much about it, I was diagnosed with this from another dr in the States and I am waiting for my dr to clarify this.. I was wonder, does anyone know if there is a Chiari dr in Winnipeg Manitoba?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask when was ur last mri?  It is possible that u have scar tissue that developed or u have other related issues...have u been to a Dr?

  When u were first dx'd did they rule out related conditions like a syrinx, disk issues, tethered cord, sleep apnea, ehlers-danlos, ICP, POTS?

[candy6129]

I HAVE ARONALD CHIARI 1 I HAD MY SURGERY 10YEARS AGO OVER THE LAST 4MONTHS MY VISION IS GOING BAD MY EYS HURT ALL THE TIME AND I JUST DO NOT FEEL GOOD. I HAVE HAD A WONDERFUL OUTCOME BUT LIKE OVER NIGHT IT HAS GOT WORSE ANY INPUT WILL HELP?

[mjdm0118]

how often do they reccomend getting mri's done if they do not treat with surgery?

[nurseling07]

Just from my own experience, I was diagnosed several years ago with a 5mm herniation. I recently started having more symptoms, pain is worse along with some slurred speech and gettin strangled drinking quite often. I had a repeat MRI which showed I am now at 9mm. Selma has repeatedly informed us that size is not always significant... I would definitely be persistent...