New here, I'm Jade aged 33 from the UK. A recent MRI has brought be to this group. I had/have been experiencing some strange symptoms over the last 4 months. Started with headaches at the back of my head, tingling/numbness anywhere on my body, stiff hands, burning/sensitive feeling on arms and thighs, muscle aches and cramps, plus a few more. Anyway the scan was done, I was terrified about what the outcome would be. Anyway my doctor called me after a long 6 weeks to say no obvious cause could be found. A few days letter I receive a letter saying that nothing serious was found, but incidentally a minor abnormality was found which was described as a cerebellar decent. After googling the term and not finding much, my friend suggested Chiari Malformation too me. Has anyone experienced similar symptoms to the ones Ive had/are having. Initially my doctor said it was caused by Anxiety, which somehow I can't believe! Anyway any input would be appreciated. I haven't been called back for another neuro appointment but I am thinking of seeing my doctor to discuss further. Thanks everyone.
Just thought I should add, I have scoliosis too, I heard this is sometimes linked
Does it say if it is descending below the foramen magnum? That is what a Chiari is. My MRI results said that the Cerebellar tonsils descended 1cm below the foramen magnum.
It didn't give any details, just said (quoting from letter) 'In your case it doesn't appear to be causing any problems' this was however before the onset of my other symptoms I'm getting now - cramps, twitching, burning muscle pain in arms, shoulders etc. I think I need to get more details if possible from the Neurologist.
Thanks for your reply
A celeballar decent if below the foramen Magnum is a Chiari 1 Malformation is my understanding..My MRI report said Chiari 1 Malformation 5mm decent.
I take it from your post no numbers were given to you??
Many docs who not educated on Chiari seem to love to say all are symproms are from ANXIETY....I cannot stand that.
Have you seen a NS yet??
Keep us posted.
Hi Lori, no numbers were given, and I've not got a follow up appointment with anyone. I feel its a waiting game now to see if my symptoms worsen/change. I don't know what to do really. Will go back to my doctor and see what he says.
hi, i'm from manchester. if you look at other peoples symptoms you will find they are like yours, mine are. some doctors dont even know about chiarri malformation. Keep pressing or answers. and good luck.x. i am on facebook with 2 girls from england with chiarri if you want to add me.
Thought I would update this, finally got in touch with my doctor, the tonsils are descended 3mm below the foramen magnum. Dr says this is borderline and insignificant. Anyway Ive asked for a second opinion so back to see a neurologist in a few week from now. Hi Marcella Curran, only just noticed your response.
I would request a flow study to be done. I do not know how far mine are descended but there's significate blockage of CSF fluid which I guess is the bad thing with chiari
Hi your symptoms are very similar to mine, my chiari is 10mm herniated and i see Walton Neuro surgeons Liverpool. You should ask for a second opinion, I have read that sometimes the degree of herniation is irrelevant they go off your symptoms.
The size of the herniation is less significant than how much your CSF flow is blocked. You need to ask for a Cine MRI That will show how much is blocked. Good Luck and fight for your health.
Your symptoms are similar to mine. Mine herniation was 6mm. When I got the initial report, my Neurologist didn't think the Chiari was an issue. As my symptoms progressed and the headaches became debilitating, that is when they sent my MRI to a NS. She took a look at them and it wasn't the length that was blocking the CSF, it was the width. Plus, I have a syrinx. There is some discussion about a Chiari 0. You can have Chiari symptoms and not have much of a decsent, if any. Definitely get a second opinion. It probably would be a good idea to see a neurosurgeon instead of another Neurologist. Ns's are more familiar with Chiari. Good luck!
BTW, I am on Amytriptiline and Neurontin for the burning and pain. They are the only 2 meds that have helped. I am 4 months post op and still have symptoms. I have damage to my brain stem, numerous nerves and spinal cord due to the Chiari and syrinx. It may get better over time, but damage is damage. Be careful and do whatever you feel is right for your body.
When I was tired and exhausted, doc said anxiety/depression. It was my thyroid. Next time she suggested it was anxiety/depression, it was super low iron. EVERY TIME I feel out of whack they STILL ask how my marriage is doing (super, btw) and talk about anx/dep. AND EVERY TIME my thyroid or iron meds need to be adjusted. When my leg hurt after my daughter was born, they thought it was post-pardum dep. Turns out, it was a sciatic nerve issue.
Now my daughter with this CM and constant headache after being 100% miss healthy her whole life...they suggested she see a psych. She did and doc said no anx/dep but another at the hosp said maybe it is despite what her diagnostic testing said.
Good luck! I just assumed because we're female they're always saying it could be emotional. If you know this isn't emotional, keep fighting! It may be an uphill battle but your health is worth it!