FND/Chiari Malformation

[NicStevens]

Has anyone been diagnosed with cerebellar ectopia/chiari malformation alongside the FND diagnosis, my 2015 MRI found my cerebellar tonsils were down by 5mm, i unfortunately was not told and after another MRI in 2018 the same thing was seen, my doc told me about it and explained it can causes dizziness/loss of balance etc, the neurologists i have seen have told me that the cerebellar tonsils are not anything to do with the condition i am experiencing now for me it is very confusing as when i search cerebellar ectopia/chiari malformation it brings up alot of symptoms which are very similar to FND, has anyone heard of this and have any experience with it please?

[210272]

Unfortunately there are lot of things that can cause imbalance and people with these symptoms are often misdiagnosed as having FND/Conversion disorder. Unfortunately doctors don't always agree with each other about scan results which is very frustrating. Given the pressure on health systems at the moment you might benefit from joining a chiari malformation support group to find out more.

What reason were you given for the FND/Conversion disorder diagnosis?

[NicStevens in reply to 210272]

Hi, Thank you for your reply, I was told because of the headaches i am experiencing which are not the same as headaches you get when you have CM that i have FND, i was told it is like the software on a computer it has started up wrong, its quite confusing as when i speak to people who have FND they are experiencing most of the same symptoms as me, i have yet to hear from someone who has tunnel vision, black and white vision or stars in their eyes though, which is one of the worst symptoms i am experiencing alongside the dystonia.

[210272 in reply to NicStevens]

Oh my days ... that's not enough of a reason to dx you with a core psychiatric condition/conversion disorder, in my not remotely humble blah blah blah. I have migraine and get all the symptoms you mention, including dystonia, from time to time. As do people with CSF leaks etc etc.

That software analogy hacks me off, especially since they (the FND experts) now think hardware might be involved.

The diagnostic criteria - and the diagnostic process - for FND could probably do with a bit of an update, eh?

[NicStevens in reply to 210272]

Hi, Thanks for your reply, Yeah it frustrates me too, i mean why explain the human body like a computer, i guess its the way they think we will understand but then i guess they think we won't understand another way which is kind of harsh, neurologists can be so confusing, i have found out more from talking to people than i have from them! Although the good thing that came from the neuro was the physio they referred me too she is fantastic and actually believes in me which i feel i haven't had from any other professional, which has made me change my way of thinking, her and my partner have made me alot more positive and i am a stronger person now. I have an appt booked to see the neuro hospital in London in May, which i am not sure will go ahead they may do video possibly, so fingers crossed i get some more understanding of what is going on 🤞 Thank you for your advice 😃

[210272 in reply to NicStevens]

Physios are great Mine said she doesn't read the referral notes because if they mention 'functional' it could colour the way she thinks about her patients and she doesn't want to work like that. After some discussion with some of her colleagues she now thinks that the mention of 'functional' says more about the person who wrote the referral than it does about the patient.

I'm glad yours has helped you to feel validated, that you get good support from your partner and that you've grown stronger through this. I think opinions amongst neurologists vary a lot so hope you can speak to one who understands the complexities of CMs, dystonia and migraine. I think it would be worth asking them whether or not your dx of FND has been made accurately since it is being over-diagnosed a lot (hence the number of times it is a misdiagnosis) and has inbuilt diagnostic inflation.

The computer analogy is weird. Would they conceptualise an actual computer with malfunctioning software (and/or hardware - they're not sure) as having a core psychiatric condition/conversion disorder? Probably not.

[Daisy9]

Hello, I agree with 210272. It’s important that you persevere with all possible investigations to ensure the correct diagnosis. I have spent years being told I have osteoarthritis, fibromyalgia, FND and PNES. As my condition deteriorated my family and myself felt there was something more going on. I have now been diagnosed with POTS and very likely Ehlers Danlos with Mast cell Activation issues. You have to be strong and hopefully have a caring interested GP which I am now fortunate to have. Good luck in your search for getting the correct diagnosis and treatments.

[NicStevens in reply to Daisy9]

Thank you for your reply

[bravesfan]

My daughter who was diagnosed with FND a few weeks ago just recently found out that her left cerebellum tonisl is 7 ml longer than the right one. She is being referred to a neurosurgeon. I will let you know how that goes. She was a healthy young lady of almost 15, who now cannot walk and has constant headaches and speech problems. She goes to physical therapy 3 days a week, and sees a counselor, neurologist and her regular doctor. I'm hoping we can get some definite answers.

[Animus25]

Have they scanned you for syringomyelia? Its a disorder that can be caused by type 1 chiari malformations. Its basically a fluid filled cyst in your central spinal canal that disruptes the flow of cerebrospinal fluid. Causing a bunch of different shit, i have black outs, seizures, poor nerve sensation in my hands and feet sometimes they go completely numb, the motor function in my ring and pinky fingers is also degrading, and i get cluster headaches. Its pretty rare and most doctors dont know what it is, they might even tell you that it doesnt do anything, which is completely wrong. But in their defense only in the last 10 years have adverse symptom observations become widely available, they really believed it did nothing.