Help with Chiari doctor semantics!?

[Paz333]

Hi,

I was diagnosed with Chiari 1 in December 2018, a 3 - 4mm drop, and have all the symptoms as well as terrible shoulder, neck and head pain. I’m 27 and have had the symptoms for 6 years. However, the specialist told me that because I DIDNT have impeded CSF flow or crowding, that there was no way that any of my symptoms and pain could be caused by my 3 - 4mm drop or confirmed Chiari Malformation 1 diagnosis. I don’t believe this is possible and just wanted to know if anyone else has had this experience or problem.

I am also looking for any proof from medical or scientific journals or doctors (anything written from an official authentic source) ,that says you don’t need to have impeded CSF flow or crowding to have the symptoms of Chiari 1 if diagnosed.

Lastly has anyone had surgery who has a drop of 3mm, 4mm or 5mm ? As a doctor told me the surgery criteria is 6mm and or has anyone helped you in any other way?

Thanks for reading,

Paz

[Hidden]

Hello Paz,

Unfortunately I don’t have many answers for you but I am in a similar position so I wanted to say hi.

I was diagnosed with a 5mm Chiari 1 back in April last year, but most of the doctors I have seen don’t think it is causing my symptoms (mostly headaches and vertigo). One neurosurgeon was very clear it wasn’t the cause (and he wasn’t particularly interested in finding out what was), and the other said that there was no way to know for sure , and that even if we operated, it may not help with the symptoms or could lead to new ones.

I am now seeing a neurologist who also doesn’t think the Chiari is the cause, but who is determined to find it and help me get better.

I will keep you posted as I figure things out with him, and please also let me know if you get any updates.

All the best,

Emmanuelle

[Paz333 in reply to Hidden]

Hi Emmanuelle,

thanks for replying, sorry your going through the frustrion too! Do you just have the drop like me then and no spinal fluid block or restriction and no crowding? Although, everything I’ve read in journals says it doesn’t matter what size the drop, you can have a huge drop and barley any symptoms and a tiny drop of 2mm and the most severe symptoms, however, it doesn’t mention about if you have full CSF flow. So I’m desperately looking for that piece of evidence somewhere to be able to argue the point with a doctor.

I’ve been tested and scanned for everything and this is the only thing found and that matches what I have. So we’ll see but I will let you know of any developments and please do the same.

Regards,

Paz

[Hidden in reply to Paz333]

Hi Paz,

Yes I just have a slightly lower tonsil but they said the CSF is flowing fine. Like you I have read that the size of it doesn’t necessarily mean no symptoms but my doctors haven’t agreed.

I do think my neurologist is trying to help though so I will see how things progress!

I will keep you posted if I find anything out!

Emmanuelle