Here’s the issue. There is a big difference between having symptoms which should be respected and acknowledged and then taking the next step which is connecting those symptoms to a specific condition which can be 'corrected"
Chiari and now EDS have become “hot diseases” The problem is they are not new, unknown or poorly understood, rather they have become Huge profit centers for initially well meaning physicians. As you read these boards few patients are helped by these procedures costing 100’s of thousands of dollars. When I say helped I mean BETTER. Don’t confuse DIFFERENT with BETTER.
The internet has boiled things down too far. Chiari is NOT Diagnosed by MRI. The condtion diagnosed by MRI is Tonsillar ectopia. Its often called Chiari, but its really not. That requires a much more in depth diagnoses. Had a long session with the recently retired director Of neurology/TBI rehab at a university teaching hospital on the east coast (he retired to my part of Montana and is doing some locum work) Asked him about the issue. He said in his career he had seen hundreds of cases of tonsillar hypoplasia and MAYBE in those thirty years 4 oar 5 that he was confident in being Chiari 1 (1% -3% which seems to be common number in most University Studies) In short don’t confuse what is happening in the "Chiari Clinics: which are closing or BEING closed on a regular basis with a real diagnoses:
Step 1: Determine if there is tonsillar hypoplasia
Step 2: Determine the degree of posterior fossa hypoplasia
Step 3: Amount ofDecrement of CSF flow velocity (This is not done by a Cine MRI)
Step 4: Relating specific symptoms to The tonsillar hypoplasia (EMGs physical exams, mapping of white matter lession/ischemic etc.
This is all a very long process. Now what irritates ME is the rush (by thankfully declining numbers) neuro surgeons to plow ahead with surgery BEFORE all the work is done. You know who these guys are. They are the ones blaming “EDS” “cervical instability” and even Eagle sydrome… NOT for problems but for the failure of surgery.
EDS has been around since 400 BC… Rare and poorly misunderstood? Hardly Hippocrates used EDS (as has practically every medical school since) as the basis of differential diagnoses. I would think after 2600 years its known about I’d sue the dickens out of a NS who blamed his failure on EDS. Same with cervical instability (which is far less of a problem than cervical stenosis which pretty much can’t be helped a lot) You check these things and correct the BEFORE you do elective brain surgery.
I guess what I’m saying is just because you have a diagnoses (or a partial diagnoses) of “Chiari” that doesn’t mean that its the cause OR its correction will solve your symptoms.
A good doctor (we have at least 3 posting here one under his own name) will do Chiari surgery but he ellminates everything else first. (Thats why they have sucess rates that significantly exceed the "norm) But more importantly the doctor that says you are not a surgical candidate despite “your research” is not a bad doctor.
BTW please excuse mt typs, the reason I met the good doctor and spent some qua;lity time with him is I had a stroke last week and he happened to be in the ER and supervised the iTP infusion (which worked pretty darn well)