Any help or advice please?

Hi all,

I’ve new around here as I was only diagnosed on 28th March. I was told in hospital that I have chiari malformation, discharged and sent Home with pain killers and a print out. I know nothing about the condition other than what I’ve read and can’t seem to find much.
It started with a headache which I’ve now had for almost 4 weeks. It is,worse if I cough or bend over.
I’ve been suffering for ages with a bad shoulder and whenever I’m ill I get the feeling that my neck is not strong enough to hold my head up. Also I suffered fir months with waking up with pins and needles in my hands.
Could these symptoms be connected to chiari?

My headache will not shift and I’ve got constant ringing in my head. When I change from looking in one direction to another it makes me feel dizzy and disoriented. Do these sound typical and will it just go on its own?

I would be very grateful of any advice or information. Thanks in advance, Cherie x

All those symptoms are consistent with typical Chiari symptoms. Have you seen a neurosurgeon? If not that should be your next step. Sadly once we start exhibiting symptoms they rarely go away on their own. At times they may be worse or better than others.

Hiya ladies,

Thank you so much for your replies. I just don’t know who to turn to. I was just discharged and not told a lot. I work in a hospital and have spoken to one of the radiologists who said the next step should be an MRI scan but nothing has Been requested so she has done that for me.
My worry is,that I work full time and have 3 children, I’ve been off work sick for 3 weeks as my head has been awful. I cannot be off work permanently but don’t know what happens next.

I do know that one of the leading chiari specialists in the UK is based about 15 miles from me and one if the main Neuro specialist hospitals. I’ve booked an appointment with my gp for Thursday so will see where I go from there.

Thanks again for your help x x x

Cherie, welcome! If you want to consider surgery as an option please take the time to find a true Chiari specialist- so important :slight_smile:

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency

Magnesium deficiency

Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done, but continue to have the same symptoms or worsening symptoms- a second surgery will be required.**** Your description of your neck issues/holding your head up made think if this one immediately


Tethered cord syndrome

I am glad you found us,