It won't show up on a standard brain MRI. You need an upright, flexion-extension MRI. And even then, the vast majority of radiology reports will come back negative, even with obvious Chiari. You need a Chiari-knowledgeable neurosurgeon to interpret the image, not to simply read the written radiology report.
So, the steps to rule in/out Chiari Malformation:
1. Get the correct imaging. (Upright flexion-extension MRI)
2. Send it to the correct neurosurgeon. (There are only about 3 or 4 specialists in the USA)
I am thinking of going to Gilete.. I haven’t had any imaging done yet so will just get whatever done there that he prescribes. Was it possible to do the imaging there at his facility?
Ohh... goodness. I am not sure I could manage trips to two countries. How frustrating.I have also contacted Dr. Gilette's assistant and she requested this upright MRI. When I asked, she told me this special device is not available in Spain and it exists in UK and Germany, as far as she knows. So I will be visiting London for the MRI scan and then Dr. Gilete will be looking at it along with the long symptoms questionnaire I completed online.
Just a little update to this thread for anyone still reading. I hope you are on the mend now Jeff!
Anyway, based on the imaging I had along with symptoms and history, Dr Gilete diagnosed cranial settling, like Jeff had. I am now saving up to back for a trial of a halo brace. Unfortunately this will just be for around 48 hours to see if it helps, as a test to see if I will benefit from surgery. The proposed surgery is C0-2 fusion, the same as Jeff had.
I so hope this works!
Can one have this without elastic skin and elastic joints? because my 23andme results show a mutation related to EDS
My hope has been that others here will get tested for these issues -- Chiari, Craniocervical Instability, Tethered Cord Syndrome -- as a standard protocol of ruling out conditions that could be causing their ME/CFS/SEID
How horrible if some severe patients have this - they can't get tested and they might have something curable
May we ask: how are you feeling in general now?
Are you on any treatments? I hope I am not being too nosey.
Thank you.Wonderful to see you back.
I think we need to start a fund to help people with severe ME/CFS/SEID get tested for these neurosurgical conditions.
After the halo, and then after surgery, I no longer have PEM or POTS.
I have free healthcare, but I don't think I would survive the transportation and the noise and vibrations of an MRI machine. Especially if I had to travel to another country to get an upright one.
Did you ever have gait issues, balance problems or issues with coordination? How was your vision?
That is truly incredible. I am so glad you are free.