EDS is not just hypermobility.....I also did not feel as though I was very flexible and my Dr explained why.....since our joints are lax, our muscles work harder to hold us together , hence we feel tight and not flexible at all.....BUT I do have EDS and my joints are hypermobile.....make sure a Dr does the testing for this to be sure....I was shocked to learn I had this.
I did not see any difference when my head was pushed on or lifted either.....
Yes, it is tricky trying to figure out what is causing what with Chiari and all the symptoms....hang in there and keep pushing for answers.
IIH can be related to Chiari..caused by I am not really sure.....but when you factor in that Chiari affects the spinal cord and or brain stem, it seems anything can happen.
Does she have Ehlers-Danlos? CCI tends to be connected to that....I was told I had CCI and would need a fusion....I have yet to get it and really feel I was lucky as my neck seems stronger rather then weaker after my laminectomy....
Have you tried lifting her head instead of pushing down on it?
I did have a CINE MRI and it did show slowed or minimal flow...I aso had a few other issues....a partially retroflexed odontoid which made the area even more crowded. I had drop attacks which made having the surgery a "no brainer" no pun intended....
You may want to have her tested for POTS...Postural Orthostatic Tachycardia Syndrome....as well as Intercranial Hypertension......since she has positional symptoms.
Not sure 20 decompressions a year is a specialist....but I am sure feels like they are....for me, I wanted a Dr that only does Chiari and Chiari related surgeries.....not one that has one every now and then....a specialist does research and his practice is focused on Chiari and ALL related conditions.
I had a few Drs tell me I did not have Chiari, one said I did ( was a supposed specialist) and he said it was "above him" and he could not suggest what I do....?? So, it is not always easy to recognize a true specialist.
A syrinx can remain the same, or increase in size very slowly or very rapidly....and you never know when it may change.....we had a few members here that had a very sudden change in status on their syrinx and had to have emergency surgery....which is not the way anyone of us would prefer to have this or any surgery done.....
Hi...not sure this Dr was/is a true Chiari specialist....so do try researching your Drs.
Also where is the syrinx? A syrinx typically develops with an obstruction to CSF flow....my surgery was done to prevent a syrinx from forming as I did not have one yet......
And surgery is done once a syrinx is formed to prevent it from growing and with hopes it shrinks.
Do look to other Drs and research them well.
BTW- my cerebral tonsils herniations measured at 6 mm on one side and 4 mm's on the other....my surgery was done in May of '09 and I have had many positive benefits and would do it again if ever needed.