Update: Or Our 1st Trip to Maryland to Find Out Whats Going On!!

Hello Friends and Family!!

As promised, here is the update.  The good news is that I am NOT crazy!!!   I have an 8mm part of my cerebellum that is falling into my brain stem.  This is causing a build up of cerebral spinal fluid and increased pressure in my brain, which is what most of my headaches, balance, vision/hearing problems, "brain fog", and stuff is from.  

I also have Ehlers-Danlos Syndrome which is a " connective tissue disorder, caused by a defect in the synthesis of collagen (Type I, III, or V). The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. Depending on the individual, the severity of the mutation can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.^[2]"

I also have Cranio-cervical Syndrome, Compressed Post Fossa, all in addition to my 8mm Chiari (the radiologist measured it at 5mm.)  Dr. Henderson also believes my "new" lower back problems are from the Chiari and EDS.  I'm now in a Vista Neck Brace to see if he needs to fuse my C1 & C2 when he does my decompression.  I will know the plan next week when I call him back to give the results of this Collar Test Drive.    (how the hell do you eat in these things?!?!?!)

I almost cancelled this appointment a few times because I was certain I would walk out of there being told I was a fool and there was nothing wrong with me.   When we first started, Dr. H said "Wow!  It looks like we have a simple chiari!!  what a welcome change!!"  by the end of the visit it was "Wow, you have a lot more going on here that you were hiding!"  Now, if a specialist, an international renowned neurosurgeon, almost missed a few things....  I'm so glad I went to him!!!  I'm certain no local person would have gotten 1/2 of it!!!!

As always, I thank you all for your support and prayers!!!  We are still at the beginning of this journey with a long way to go!!!