Sometimes there are things that you know, you have researched, you have discussed and yet they wont sink in entirely. The appointment I had yesterday reminded me of this. I had waited over a year to see one of the top gastric motility specialists in the state of California in idle hopes of further treatment options for gastroparesis. Unfortunately the year of waiting and six and a half hour trip yielded nothing in results except for an odd sort of piece of mind.
In the ten years I have suffered with motility issues I’ve read hundreds of articles and studies, had appointments with over a dozen gastroenterologist, two gastric surgeons, and spoken with possibly thousands of other sufferers. In all this you learn quite a bit but without a knowledgeable and willing doctor most of it is beyond my reach. Pro-kinetic drugs such Propulsid (Cisapride), Motilium (Domperidone), and Reglan (Metoclopramide). Anti-emetic drugs, antispasmodic drugs, as well as surgical options including Pyloroplasty (cutting through lower muscle of the stomach known as the pylorus) and the Gastric Pacemaker implant. But for many such as myself there is a time when you have run through nearly everything available to you. Either by trial and error or exclusion as was the result of my long awaited appointment.
My last remaining pharmaceutical options in Propulsid and Domperidone are to dangerous for my weak and slow heart and at its best the Gastric Pacemaker has only a 50% success rate for patients with Ehlers Danlos Syndrome (EDS). Adding to that the danger of surgery in someone who has cross typed EDS with vascular features leaves a disappointing outcome. In the end though it was my decision to decline the pacer. With its limited success in patients of my type, the risk of surgery, and the fact that it would prohibit me from any future MRI’s which are critical to the assessment and management of current and future issues with my joints as well as possible Chiari and Tethered Cord in the end I decided it would be of more detriment than help to my quality of life.
There is a certain kind of peace in the result even though it essentially changed nothing. I suppose at times it takes hearing it from someone “official” that you have exhausted all that medicine has to offer you at this point in time. So until the point I am unable to tolerate any oral feeding and must resort to Total parenteral nutrition (TPN) in which you are fed intravenously via a catheter typically placed into your chest (central line) or arm (peripheral central line) I am where I am and I will cope as best I can. So to tie in the title sometimes all your able to accomplish is changing in the scattered thoughts and hopes of one hundred pennies into the solid answer of a whole dollar bill and that has to be good enough.