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Ive been told I have chiari, low lying cerebullem. Nothing was properly explained to me nor was my mri. I was told my mri only showed having a headache. Has anyone else been in this type of situation? I've been currently suffering from a relentless migraine as nothing is working anymore and weird symptoms.

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  • Posted

    I hear u on that..my 13 year had server headaches and could not walk most days..that was over a year or so until I got really mad then they did an mri and a c.t scan and found out she needed sugery..she had it done in December of last year... but she has had no relief from the sugery what so ever.im so sorry they did not help u in any way....
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    • Posted

      From what I've been reading the surgery is 50/50 sometimes works sometimes people have to go for more surgery. Hopes she feels better. It seems this condition is not well known from neuros

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    • Posted

      Yes it is a 50/50...my daughter has to go for more sugery do to the fact that it has come back but at a different spot this time...but she can not have one for at least a year...even then not sure if I can go thro that again...this time the doctors are not sure if she will even make it off the table or if she will be in a wheel chair..thanks for your thoughts.
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  • Posted

    HI,

    Basically, what happens is your cerebellum tonsils herniate into your spinal canal.  Based on the amount of herniation a number is assigned like 13mm.  If you are symptomatic surgery may be required.  Sometimes people have Chiari and no symptoms and no surgery.  Symptoms are headaches, eye problems, hearing loss,  balance issues, problems walking, body pain, arm,neck and shoulder pain. Also sleep apnea,stomach problems and insomnia are signs.  You might schedule an appt with a neurosurgeon.  Check ou video on utube. Also Chiari U.K. Is a good Facebook group.

    Sorry, your having problems.

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    • Posted

      Ty for the reply. If I haven't done my own research I wouldn't of known that most of my symptoms are from it.i made an appointment with a new neuro so I will be getting my data for that and I will see exactly what's going on. I was told only that I had it and what type of new medicine to try which I am against since nothing is working, not even the botox and not the abortive stuff.

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    • Posted

      i just reviewed my medical records ,in the notes for follow up all is said is mri brain stable?

      Magnetic Resonance Imaging of the Brain: 05/25/2016

      Utilizing the Hitachi Oasis High Field MRI, sagittal and transaxial T1 weighted, FLAIR and T2 weighted, and diffusion weighted images of the brain were obtained from the skull base to the vertex.

      The ventricular system is of normal size and shape. The sulci and fissures are of normal size and shape. There is a 3 mm FLAIR hyperintensity of the right inferior frontal gyrus white matter shown by transaxial FLAIR image 13, without diffusion abnormality, mass effect, or edema. Additional faint punctate peritrigonal FLAIR hyperintensities are also present without edema, mass effect, or diffusion abnormality. The white matter findings are nonspecific and may be related to migraine type headaches. Differential considerations include microvascular and post inflammatory etiologies.

      The posterior fossa cuts show extension of the cerebellar tonsils to the foramen magnum with mild inferior extension of the right cerebellar tonsil by approximately 4 mm. There is no evidence of tonsillar dysplasia and there is no evidence to suggest syringomyelia of the partially visualized cervical spinal cord.

      The visualized vascular structures of the vertebral basilar and carotid arterial systems are patent. There is no evidence of a diffusion abnormality.

      The mastoid cells are well aerated as are the paranasal sinuses.

      IMPRESSION: Right frontal subcortical and periventricular small number of faint FLAIR hyperintensities without edema or mass effect. The findings are nonspecific and likely related to migraine type headaches. Differential considerations include microvascular and inflammatory etiologies. Low lying cerebellar tonsils without hydrocephalus or syringomyelia.

      Thank you for the courtesy of this referral. ​

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    • Posted

      I would ask what is meant about the 4 mm extension of the cerebellum tonsil in the 5th paragraph up from the bottom.  
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  • Posted

    hi there, I suffered with migraine and passing out my whole life.  Neurologist never found anything throughout the years having MRIs. Nothing showed up until I was in a car accident and then they found it but I was never told.  When the symtoms got worse, I decided to read my own MRI reports of which I FOUND THE NOTATION that I have CM.  Fast forward, after the decompretion surgery, all my symtoms disappeared but started coming back 3 years later.  Good news is, Imetrex and dramimine helps me with the headaches, neck pain, and dramimine helps me with balance, dizziness and nausea.  The numbness didn't really come back but I do need my left to take over because the right arm goes numb if I use it.  I'm pretty sure your symtoms with get worse before you choice the surgery.  I didn't do anything until I was totoally numb on the right side, I couldn't stand with out leaning on the wall, very weak, lots of sleep, etc.  So, you need to be your own doctor, read a lot on it, list your symtom and then if they get worse, request MRI with barium contrast ct.  if you haven't had one.  My experience is that I had to get pushy and go right to a neurosurgeon. (they seem to know more than a neurologist). Try this, put a few pillows or books under your mattress so your head will rise up while you sleep; this way you won't be so dizzy and less head presure when you wake up.  It has to be under the mattress.  Good luck & my prayers are with you!

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    • Posted

      That's a great idea with the pillows under the mattress, I wake up every morning with either a migraine or really bad neck pain. Ive been making notes on what I want to ask. Should I ask my primary doctor about anything. Same to you I don't know if I can do surgery at any point unless it's last resort.

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