cerebellar tonsillar ectopia

[beau954]

i was diagnosed with mild cerebellar tonsillar ectopia after i had a mri due to major car accident. i also have a bulged disk at c5-6. its been 5 months and neck pain is getting better but  i have headaches at the base of my skull as well as my right eye almost daily . I also cant sleep im up to 6 am sometimes  with headaches so bad it makes me vomit. i am so sleep deprived i feel like a zombie and i also have numbness in my right hand . Ive noticed that i seem to be light sensitive as well as reading seems to make them come on stronger. im going to see a NS in a few days but im just wondering if this sounds like a case that decompression surgery may be needed. Not sure if my doctor specializes in this condition

[selmaS]

Hi and welcome to the Chiari forum.

There is no way to know from what u said if surgery will be required...as it is possible to have acquired chiari from an injury/accident...or to have symptoms from congenital chiari triggered from such an event.

U need to figure out which u have, acquired or congenital chiari ...then, figure out if u have a CSF obstruction...and how is this affecting ur overall health other then ur sleep deprived issues and HA's.

  Have u had more MRI's then just a brain MRI?...A cervical spine, thoracic and lumbar spine MRI? A CINE MRI?

The symptoms could be chiari, but u do not want to consider it until u have all the testing.

     Having a true chiari specialist is key...we do have a list of drs u can use to research, the list is not a referral...so do research all drs.U will find the list in the Health Pages, see the link at the bottom of this page.

   "selma"

[beau954]

thanks so much for the responce . I did not have a brain mri yet i had one of neck and back. the back one found a equivocal right postlateral synovial cyst on the right at l5 5millimeters but without impingment of nerual elements likely from the l4-5 facet . my back is doing much better atm due to phyical therapy . my neck they found the mild cerebellar tonsillar ectopia and mild ventral osteophytic bony ridging as well as a small left paracentral disc protusion at c5-6. I have never had headache issues before in my life accept every so often id get slight headache. this is now taken over my life i am barely able to function due to lack of sleep and the pain. i basicly lay in my bed all day long with lights out in the attempt to prevent the sever headaches . I am unable to work or due much of anything accept go to phys therapy . my doctor has me on methocarbamol etodolac and codine 3 . they don't seem to do anything for the headache even when i take more then recommended. the only thing that seems to have made any difference is traction . it lessened the numbness in arm and right hand although it still is persisting as well

[selmaS]

  Make sure they test u for ehlers-danlos syndrome as well....since traction helps, it could be a possible to also have cranial settling....

but with the disk issues I would want EDS ruled out too.

   The sleep issues r very much  a problem....and even when we do get sleep we do not feel refreshed...very fatigued.

  Lights do affect the type of HA too....as will sounds levels,.

Do look in to a chiari specialist...

    "selma"

[linnielou232]

I know med's are not for everyone but I was in your sisuation in the process of Chairi and didn't get sleep for 3 day's.  I finally called the Dr. and they prescribed Ambien which help's me nightly, some people are unable to take this med.  If you are going to the Dr maybe ask them about this.  I know having everything else going on you need your sleep to get some rest.  I wish the best for you.

[billyz123]

Ambien is a very risky medication to take for a temporary sleep solution. I would recommend Xanax. It's also worth noting that a Congenital Chiari case can become symptomatic after a trauma. I have had all the symptoms that you listed without a trauma. I have found that too much activity will make these symptoms muchhhhh worse and it takes a couple weeks to recover. The symptoms that were most aggravated  were radiating pain all over and the sensory overload (too many irritating sounds, light).

In any case, Vomiting is always a big red flag. Make sure to mention this to doctors.

[Rylanesmom]

I too take ambien nightly with Approval of my ns.
We tried many things and I was not even able to sleep 1 hour before ambien due to pain.
I am hopeful that I will not need this after decompression yet not sleeping is not an option.