Dee, This is a good question. I know a little bit. Back about 15 or so years ago a Dr. Banner ( a family physician) was diagnosed with CFS. Dr. Banner eventually figured out that he had many symptoms that were identical to those reported by people with Chiari malformations. And this is true, do a little search for 'Chiari symptoms.' Dr. Banner eventually connected with neurosurgeon Michael Rosner, who ordered MRIs, etc. The MRIs demonstrated abnormalities consistent with Chiari malformations.
Dr. Banner had surgery and experienced amazing recovery from chronic fatigue symptoms. Another neurosurgeon, Daniel Heffez, joined Dr. Rosner in investigating surgery as a treatment option for people with severe CFS and various cervical spine/skull base anomalies and poor CSF flow ( via CINE MRI flow studies).
There was even a 20/20 program that explored this potentially major break through.
At that time most of the Universe was thinking chronic fatigue/fibro were 'psychiatric.' And these two (wonderful and brilliant) neurosurgeons were doing neurosurgery to cash in on 'psychiatric' patients. Then, all Hell broke loose. Journals refused to publish Dr. Heffez's work on cervical myelopathy ( disorders of the cervical spinal cord) Dr. Rosner lost his license twice. Neurosurgeons became very hesitant and concerned to get at all involved in potential structural issues at the junction between the skull and neck for people dx with CFS/FM.
I actually went to one of these neurosurgeons ( 2005) for a consult and to have a CINE flow study. He measured my posterior fossa - it was small ( according to published data - and this is found in Chiari people). I have a short clivus ( another cranial bone) - also typical in Chiari. My CINE flow study was very abnormal. I do not have cervical stenosis ( or narrowing). Sometimes this is the main problem. Also, my cerebellum is low - blocking spinal fluid to some degree. But, I do not have any downward descent of the cerebellar tonsils. So, no true Chiari. However, due to other structural issues, I end up with the same problem - blocked CSF flow from the brain to the neck and possibly altered blood flow to the brain, and possibly poor venous drainage from the brain.
So, we are right on the edge of knowledge in understanding these complex structures of the central nervous system and exactly how and when they are producing symptoms. I spoke with 3 FM/CFS people at conferences who got very well after 'Chiari surgery.' They had the typical downward herniation of the cerebellum, but had been diagnosed with CFS without ever having an MRI and CINE MRI with an expert neurosurgeon.
More recently there has been discussion of exactly how far do the cerebellar tonsils have to descend in order to call it "Chiari." The old rules said that the cerebellar tonsils must descend at least 5 mm. to be called Chiari. If the tonsils descended 3 mm - and people had all the symptoms - sorry, no Chiari, no surgery. Now some neurosurgeons think that there should be a Chiari O, that is, the cerebellar tonsils do not descend at all, but there is still blockage of spinal fluid flow.
I did try Diamox ( 1/2 of 150 mg.) which reduces spinal fluid production. Not so good for me. I got extremely tired. Lots of peeing, burning nose, funny taste in mouth, full body tingling, blurry vision, headache, mild nausea. Hmmm.
So, . . . . ???? Hope this was helpful.
