Chiari Online Support Group

I'm not sure what to say to doctor

Hi all, found this site a few days ago. I was diagnosed with fibromyalgia a few years ago. Finally went down the route of getting home help and personal cares. Whilst going through the assessment for this I noticed that on my hospital file it has Chiari Malformation type 1. I have never been told about this so it’s very confusing and scary. Currently waiting to see my doctor on the 8th of November. I suffer various symptoms that I have no idea if they are related or not. Could really do with some opinions.
Balance issues, blackouts (especially when my neck is really sore), voice is different, sometimes are eating if I cough it’s like not all the food went right down. Ringing ears, painful neck at base of skull. Please give me ideas thanks

1 Like

I would suggest that you request having your MRI images reviewed by a neurosurgeon. Neurologists lean towards simply reading the written report from te radiologist. And the radiologist is not trained to determine if a Chiari malformation is a concern. Both the sagittal view and the horizontal view need to be visually assessed and the radiologist and the neurologist do not do this.

List your neurological symptoms balance, change in voice, swallowing, vision changes, ear ringing, occipital pain (all in the Chiari sphere of symptoms) as they are not related to fibromyalgia.

Be a voice but not antagonistic. Be aware that you may need to see a number of specialists before someone will listen and act. Try not to take it personally as not all health care professionals have an adequate knowledge base to diagnosis and treat Chiari.

Good luck and lots of strength and patience in your health journey

3 Likes

Dear Kiwi, Wow. You got Chiari symptoms all right! With Chiaris, your brain stem is most likely getting ‘the squish’ by some of the cerebellum oozing out from under your skull in the back. (that’s why the ‘headache’ in the bottom back of your skull.) Thing is, when your brain stem gets compromised, a lot of your Central Nervous System’s AUTOMATIC functions get compromised. You are having trouble with your gag reflex. Your brain stem is supposed to stop food/liquids from going into your lungs. I know mine doesn’t work right anymore. If you can’t cough out what you aspirate into your lungs, you run the risk of pneumonia. Fortunately, I have an extremely strong cardiovascular system and can cough out everything I aspirate. But, I met a 60-year old lady whose only Chiari symptom was pneumonia - she was constantly inhaling food an such - and was unable to cough it out. She ended up in the emergency room time and again with pnuemonia. (I do very hard powerwalking which keeps my lungs strong) Your squished Central Nervous System affects many parts of your body - so symptoms will show up everywhere! Many Neur-docs have trouble pinpointing all those symptoms to Chiaris. (For me, the decompression surgery helped a LOT. Not 100% - but helped a lot.)

1 Like

Thank you both. Is it possible that the blackouts (fainting/syncope) is related to Chiari?

1 Like

Hi @Kiwi

I have blacked out once and have also passed out once but this was quite a long time ago. I get very dizzy though and feel faint quite often, many times per day so I would say yes.