After trying every medication out there, and drinking gallons of Gatorade, Pedialyte, taking salt tablets, and being told I needed a neck fusion and likely Chiari surgery (then later a brain shunt) — GADS — I’ve come out the other side with no surgeries, and basically “normal bodily functions”. 😉 I was even told to have my gall bladder removed, I needed surgery for a “broken” ileocecal valve (between my large and small intestine), I needed surgery on my rotator cuff(s)… The list goes on. I *think* many folks are like me — we may be able to avoid much of this if we can identify what’s happening in each one of us, and hit the source of the problem. Otherwise, I think we’d just have loose joints, basically, right? Not me! EVERYTHING in my body was shutting down. This is a horrific condition. Let’s see what we can do to make it merely “an annoyance”. In my mind, that’s what it should be. Ditto for Chronic Lyme Disease, “Fibromyalgia, Chronic Fatigue Syndrome. It was suggested (incorrectly) that I had all of these (as did my kids). I have some ideas as to what is going on — beyond The Driscoll Theory. But we need to take care of this in “layers”, as I’ve found, and the layers discussed in The Driscoll Theory are a necessary beginning. Big hug…
Dr Diana, after 2.5 years on Diamox it seems my body has hit a wall, and like you wrote “everything is shutting down”. My PH is fine, I’ve upped the dose, and no help. I’m living in a soft collar, which helps a little, and about to order a hard collar as traction greatly helps reduce this horrendous back of head/neck pain. I have been researching Dr. Henderson’s work and my symptoms all line up with CCI/chiari/occult tethered cord/etc. Trying to figure out how this ties in or doesn’t tie in with the Dricoll theory? If a person has cranial instability (caused by our defective collagen and extreme looseness) that is causing issues, might it be the real root of some of our symptoms? Have you seen “A Unifying Theory” by Dr. Andrew J. Holman? http://www.youtube.com/watch?v=Ei8LbUDkQno
I’m desperate for relief from this back of the head/neck pain, and looking into going to see Dr. Henderson, no small feat as I’m on the opposite coast. If he found CCI/chiari, etc. I would gladly have the surgery if it would end this pain and that it might help with autonomic issues as well. I’ve already lost my gall bladder and now have severe problems with my bile duct (SOD – already been treated once), my stomach isn’t digesting food much at all anymore (everything goes right through undigested into the toilet- with severe diarrhea that even 6-8 Imodium doesn’t slow down, and might be why Diamox isn’t working, cause everything exits before it can be absorbed..???), and I have to have surgery in the next month to have numerous kidney stones removed because they are chewing up my kidneys (probably exasperated by taking Diamox).
I would love to hear your thoughts on Dr. Henderson’s work and how his surgeries have helped EDS patients, etc.