Low Lying Cerebellar - Help!

[erinfelt]

Hi, Okay I have been having strange sensations all over my body. Mostly a electricity, tingling on small patches of skin all over my body. I have had mild confusion, one day I can remember names like lightening fast and other days I struggle knowing someones name I've known 20 years. I have headaches and eye pain, and neck pain. My neck pain however is from pinched nerves and disc problems.

My neurologist wanted to test me for MS and the MRI came back negative for MS but the report said "Low Lying Cerebellar" She said I really shouldn't worry about it, it's very small and I've probably had it since birth. She didn't give me any advice on what to do, but if I had any questions I should contact a neurosurgeon or specialist. She kept insisting that it was insignificant. I asked if it was Chiari and she said absolutely not that that would be a sever circumstance and that was not my case at all. But to please follow up with a neurosurgeon/brain/spine team to get better answers.

Could this be true? Are there cases like this? Also, do I need to put any restrictions on myself or can I keep living my life? As it's going to be months until I can get into seeing a specalist I wanted to ask if I needed to alter my life? Is this dangerous? I can find so much information on Chiari but none on just low lying cerebellar.

Thanks.

[Mindymoney122]

I'm not a Dr but sounds like chiari to me which I have NY neuro.Dr said its nothing to worry about its not bad now u have extreme symptoms and the more symptoms you have your chance for surgery helping goes down so get in with a chiari specialist NS is your best help and I think any Dr who down plays your concerns shouldn't be your Dr.sorry that just took me back to my neuro. Dr and it makes me so mad because if she would have check things out more i would not be in thus much pain something could have been done when I had a great chance of surgery helping but please get a second opinion and see a specialist

[selmaS]

Hi and  welcome to the Chiari forum.

The difference between Chiari and low lying tonsils is vague and difficult to understand for many of us including Drs....but the way my Dr explained it to me is this....Chiari is the malformation of the skull creating a smaller area to hold the cerebral tonsils , since the area is smaller the tonsils are forced to herniate out of the skull compressing the brain stem or spinal cord....

Low lying tonsils can be acquired by bunt force trauma...and yes possibly birth, but Chiari is a congenital condition so yes that is since birth which is why so many of us are not aware of our symptoms since it is our "normal"...until things increase or symptoms worsen. Low lying tonsils can cause the exact same symptoms and if they do not retract on their own the same course of treatment is used.....

More testing and review of the MRI's you have had should be done by a true Chiari specialist to make a final DX.

AS for restrictions, do listen to your body....if certain activities cause your symptoms to increase or cause new ones after the activity then do try to avoid it...

Strain is one of the main things we are told to avoid with Chiari and until you know for sure you will want to relax and not stress over all of this as stress can also trigger symptoms to flare.

Try to relax and know you are not alone

[erinfelt]

Do I need to live my life scared all the time that I'm going to strain to hard lifting something and my brain will slip down? I was given absolutely no information about what to do next just if I have questions contact a specialist. I'm so worried and now just panicked and anxiety stricken i just want to lay in bed and not move just in case I could hurt myself. I'm so scared please help.