Advice please??

[lizziekelly291]

Hi, i have been told that i have low lying cerebellum but not sure on the exact figure. I am really worried and am finding it hard to sleep now. I have constant severe headaches, fatique, bladder and bowl weakness, muscle weakness in my bum, legs and hips. I sometime feel like i am going to pass out, have tingeling sensations in my arms and legs and now i am getting to the point where i can't handle the pain. My doctor is going to write to neurosurgen to ask his opinion and i just want some advice.

Thanks

[lizziekelly291]

Thnaks guys, i have been referred to a chiari specialist and itsbeen put as urgent so should hopefully hear something soon. Thanks for your help and i will let u know what they say!!

[2009Zipperhead2009]

My Chiari was found by a CT Scan w/wo contrast. Post op, my Dr would always order a CT Scan to ck for spinal leakage n yes I had to have two additional surgeries due to spinal leakage.

Good Luck!  

[selmaS]

  It is bcuz of where u r ....sorry, I forgot about the UK....

Hmmmm well have u looked at the list of Drs on the Ann Conroy Trust ?

U will have to research them but it may help u find a dr that is better able to help u and has more experience with Chiari.-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569

[lizziekelly291]

Hi i cant get a copy, they wouldnt even tell me what the report said when i rang the radiography department, they said my doctor would have to request it. I think i might have to pay for it if i can get a copy.

[selmaS]

  Hi...do u have copies of the MRI's?...if not go to the facility/or call them and request copies of the MRI's on disk and the reports so u can get a 2nd opinion.

  "selma'

[lizziekelly291]

Thanks guys. Hope u r all good? I went back to my doctor and they said that all my report from my MRI says is slightly low lying cerebellum and nothing else so im no closer to knowing anything. She is putting me referral to the neurosurgen as urgent though so hopefully i will get to see them soon and find out some answers.

[selmaS]

  U r so right...tonsillar ectopia or low lying tonsils, can mean the same symptoms will be felt by the pt...but it does not always mean it is congenital.....so it is important to find out if it is acquired or congenital and could be y some radiologists use the diff terms as they can not tell....or they feel it is incidental.

  
   "selma"
  

[jen0959]

when my mri was done the word chiari was not on there.  there is another word that is the same thing.  it was something like: tonsillar ectopia.  is that on your scan? and it should give you a number like 7mm.  anything 5mm and up is considered chiari.

[selmaS]

  No worries...good luck and do post an update : )

    "selma"

[lizziekelly291]

Im going to go back to the doctors on Tuesday and ask some questions because they didn't say much to me at all and hopefully get the information i need. Thanks for your help

[selmaS]

  Hi and welcome to the Chiari forum.

Low lying cerebellum or low lying  cerebral tonsils can be considered chiari in that they pretty much are the same thing...with chiari malformation, the arnold was dropped and is used to describe chiari II , but with chiari u have a malformation of the skull that forces the brain to herniate below the foreman magnum*...this herniation is the low lying tonsils. Many drs will measure the distance the tonsils are herniated past the FM*, but that is not as much a concern as the shape and width of the tonsil...u need to know if u have a CSF obstruction and a CINE MRI is a good means to do so...this will also help determine if u have overcrowding.

Ur symptoms do fit, but they can fit for quite a few different conditions.....

Since u had a MRI. I would make sure u have a copy of the MRI on a disk, and a copy of the report so u can get a 2nd opinion.

All testing for this would be a brain MRI w/wo contrast, cervical spine MRI, a thoracic and lumbar spine MRI...these r to also rule out syringomyelia and tethered cord....u also want to know if u have ne disk issues, sleep apnea, ehlers-danlos...low levels of vitamins and  minerals.

  Make sure the NS u r referred to is a true chiari specialist...we do have a list of drs to help u with ur research, the list is not meant as a referral and u do need to research all drs on the list.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"

[lizziekelly291]

No not yet, my GP is going to refer me to a nuerosurgen and see what they say. They told me my MRI was normal and that everything was ok. Then went i went to the doctors for something else they said oh by the way there is an abnormality on the scan. What tests do they for Arnold Chiari?

Thnaks

[2009Zipperhead2009]

Have they checked u for Arnold Chiari Malformation Disease?