Hello everyone, If I done my homework correctly, Low Lying Cerebellar Tonsils are also know as a "Chiari Malformation?"
Well, I have had numerous neurological symptoms over the last 2 years with NO ABNORMAL findngs in the Spine and Brain until 2 weeks ago. A brain MRI was done and this was found incidentally. I won't list every symptom I have, but the rare thing that sticks out is I will occasionally have 2-3 drops of clear fluid just start dripping from my nose. Very salty tasting. Does anyone here with CM get or had spontaneous CSF leaks from this? I am not sure why my lumbar and thoracic spine HURT so damn bad but the cervical neck area aches on occasional..Mostly stiff.
Basic symptoms I have are
Balance issues, Hyperreflexia, numbness and cold sensations in feet, vision problems, Ringing Fluttering and Roaring in my ears, bladder issues, band like squeezing sensation in back and chest, occasionally choking on my own spit by swallowing wrong (A LOT)
Wow...yeah u r describing many of the symptoms of Chiari and related conditions.Sounds like u may have other issues...to get a spontaneous CSF leak is not that common from what I have heard.
How is ur BP?.....
It sounds like u may have a syrinx, or PTC in addition to chiari.PTC = Pusedotumor cerebri or intercranial hypertension.
Many of us have gotten the run around and our dx was incidental...we get hope from the poem at the top of the forum By Dr Oro..u may want to see if u can get in with him ...I am not sure but I am not sure if he treats PTC...so, u may want to get a good NL to check u for chiari related conditions.
I have no idea if u have over crowding or a CSF blockage...did u have a CINE MRI?Also a check for syringomyelia....tethered cord and EDS=Ehlers-Danlos Syndrome.
I am also glad to have u as part of our chiari family, but sorry u had to seek us out.
We will be here to support u and offer what info we can
And as Elizabeth asked...have u been to or r u scheduled to see a chiari specialist?
Were u in a MVA recently....in the last few yrs?......
Thank you Selma. It could be from other things but majority of these symptoms gotta be from Arnold Chiari. One Doc thought it was all in my head and DX'd me with Somatoform disorder. I hated that BI**H
I know I am going to see a Neurologist at the Cleveland Clinic in less than 2 weeks away. because I do have a lot of Neurological complaints. Fasciculations, Muscle Atrophy, Hyperreflexia, Positive babinksi, Unilateral ankle Clonus and severe Degenerative Disk Disease with protrusions on every vertebrea of my spine.
Since they could find a cause, there DX for now is Paraneoplastic Myelopathy. But after getting the report today, I saw the Low Lying Cerebellum Tonsils and BINGO! The pressure in my head sometimes is overwhelming and it feels like my brain is drowning which cause weird sensations in my head as well as noises..Like phantom movements inside my head. Fluttering and whooshing in my ear.
I am glad to be part of the forum and certainly embrace all of you with your kindness, experience and moral support.
Ditto to what Elizabeth and selma have said and welcome to our family....
I have CM, syringomyelia (7mm from C5 > T2) and some other CM related issues....
Positive babinksi is a sigin of Spinal cord compromise. I have had a full spinal MRI with/wout contrast and if you have not had this done then you maybe should inquire about it. I also have Nystagmus (Downbeat) witch is a vision problem that makes my other balance issues worse...
Welcome to the forum. I am sorry you had to seek us out but i can tell you that everyone here will try to help you with your questions and give you plenty of support.
Good luck finding your answers.
I am going to back off trying to pursue this diagnosis of low lying Cerebellar Tonsils for now. I had 2 different Radiologists tell me that this diagnosis is not worth chasing and actually laughed. One of the Radiologists said "this is 100% not Arnold Chiari malf...low lying Cerebellar tonsils is a normal variant
So now I am stuck with the fear of my Diagnosis of Paraneoplastic Myelopathy and that totally *****!
I also have low lying cerebral tonsills. 3mm. My symptoms include, dizzy and headaches. They also thought I may have MS because of my MRI findings. I am scared to death, I have no other symptoms. HA, dizzy and some times I feel like I may pass out but don't. Please help.
For many of us, MS, Lupus and Lymes are ruled out as the symptoms can be very similar....
What u need to find out next is if u have a CSF obstruction which can happen even with a small herniation...and related conditions as they can also have many of the same symptoms....and do take stock of symptoms u may have had in the past as they could have been Chiari as symptoms come and go and with them being so cyclic u may not be aware u had symptoms.....
Take a deep breath and know u r not alone...oh and exhale too.... : )
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