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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.Would a chiari malformation show up on a standard brain MRI?
Or do they need to look closer to rule this out?
I had severe PEM for years, the classic ME/CFS differentiating type. Sometimes, even while lying flat, just watching a TV screen would cause severe PEM. I also had EBV (positive IGM and PCR) as well as low NK Cell function. At my worst, I couldn't speak, due to exhaustion. Overall, I've had severe POTS, MCAS, and CFS/ME. I've been hospitalized multiple times for MCAS.Seems to have some similarities with CFS, but PEM seems to be a clear differentiator (immune symptoms also seem to be absent in Chiaru malformation). Still it seems like a great idea to check for people who don't have a clear-cut ME/CFS.
@jeff_w Did you have digestive or neuropathy issues?I had severe PEM for years, the classic ME/CFS differentiating type. Sometimes, even while lying flat, just watching a TV screen would cause severe PEM. I also had EBV (positive IGM and PCR) as well as low NK Cell function. At my worst, I couldn't speak, due to exhaustion. Overall, I've had severe POTS, MCAS, and CFS/ME. I've been hospitalized multiple times for MCAS.
It turns out that I have cranial settling, with my skull sinking downward onto my spine, causing brain stem compression. This sinking downward isn't outwardly visible, so you couldn't tell from just looking at me. (This sinking downward also is not a Chiari Malformation, but it is similar, as it can result in cerebral spinal fluid problems as well as autonomic nervous system issues.)
I needed an upright flexion-extension MRI to find the problem, and I then needed to send the MRI image to a knowledgeable neurosurgeon, as the radiology report was negative. The MRI revealed to the neurosurgeon that my skull has been sinking down into my spine, due to lax ligaments from Ehlers-Danlos Syndrome (EDS). The result is brain stem compression. My spine is protruding into my skull, touching my brain stem and compressing it. This is not supposed to happen! This causes many neurological problems, such as in fatigue (PEM-type), POTS, etc.
As for the immunological signatures unique to CFS/ME, it could be that neurological compromise results in specific immune disruption. Our nervous system and immune system are intertwined. A deficit in one system can result in the other system becoming abnormal.
At any rate, my craniocervical problem is entirely correctable with neurosurgery. I'm scheduled for surgery at the end of the month. But for now, I'm in a halo vest that's keeping my head from sinking onto my spine.
In the halo, I no longer have POTS. I no longer have PEM. My ME/CFS might have been, all along, a neurosurgical/structural problem.
Since my severe onset in 2014, I had angrily wished that this disease were curable with surgery or chemo. Well, it now seems like it is. At least the type that I have.
And how many others are just like me, but undetected?
I see your experience in the prior threads. What made you pursue the neurosurgeon? That seemed an area that you did not give up on.These are my sons issues. Can you tell me or pm me the neurosurgeon/neurologist you went thru? What is the name of the procedure your having? Currently Nick is seeing Dr Chheda which is Dr Kaufmans associate.
Thank you for sharing your experience.
These are my sons issues. Can you tell me or pm me the neurosurgeon/neurologist you went thru? What is the name of the procedure your having? Currently Nick is seeing Dr Chheda which is Dr Kaufmans associate.
Thank you for sharing your experience.
Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.
But for now, I'm in a halo vest that's keeping my head from sinking onto my spine.
In the halo, I no longer have POTS. I no longer have PEM.
@Jessrose21 -I'm very interested in getting tested for Chiari Malformation but I have a cardiac pacemaker, so an MRI isn't possible. I guess a CT scan or x-ray would be what they would use to diagnose me? I wonder if a neurosurgeon would do a trial with a halo vest first?
All of this could fit Chiari and CCI. You could also have Tethered Cord. Good luck!I've been very sick with ME/CFS for nearly 25 years now and severe aches and pains in the base of my neck have always been a symptom, especially when I've overdone it. I get headaches that I call the "helmet of pain" and must lie completely still for hours in the dark, unable to even think without experiencing waves of pain and nausea. Even on a "normal" day I have to sleep on my stomach or side with my chin tucked into my chest just to be comfortable. No idea if those are Chiari symptoms. I also get tingling in my hands and feet, and also have Raynaud's syndrome. I see stars and feel very light-headed if I have to crane my neck back and raise my arm over my head to reach something, for example. I also experience severe PEM just from taking a shower or going to a dr appt. I'm basically housebound and sit in bed or on the couch all day, propped with pillows. It would be a dream come true if CM was my problem and an operation would fix me!
A CT scan can sometimes catch this problem (Chiari as well as CCI). You would need to get a flexion-extension CT. A regular one is likely to miss the problem, if you have CCI.
A halo vest will help if you have CCI, but it won't if you only have Chiari.
You'll need to send your imaging (flexion-extension CT scan) to one of the three neurosurgeons in world who can diagnose these problems accurately.
All of this could fit Chiari and CCI. You could also have Tethered Cord. Good luck!