Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update
Posted on November 29, 2010 by Diana Driscoll| Leave a comment
What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!
I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?
We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely – until now.
May I please introduce you to Dr. Michael Flanagan? He is a brilliant doctor who has been studying and researching this condition (and how it relates to M.S., Parkinson’s, and Alzheimer’s) for about 25 years! The anatomy of the skull and upper cervical spine is complicated, but the CSF (cerebral spinal fluid) flow pattern is extremely difficult to understand. Dr. Flanagan understands it down to the tiniest detail. He was able to explain to me what I have been unable to put into words for years. He knows why we can be vertical, but not for long, and feel better when we are horizontal, but not for long.
We are all different, of course, so please bear that in mind when you review his research. For our family, however, he is dead on. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.
We will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).
Dr. Michael Flanagan just published a book on this subject called The Downside of Upright Posture. I would encourage all of you to purchase it. He also has a blog that I highly recommend: The Upright Doctor
You can reach out to him, also. I don’t know how he answers the volume of correspondence he receives, but he does so with empathy and an incredible level of knowledge. The only thing I ask of you all is that if he helps you, please spread the word. He deserves so much more than accolades for all of his work, but for now, we should be vocal with our appreciation. He has sacrificed much for all of us.
I’ll have more updates for you soon, but until then, never give up.