A casual visit to the doctor, which the average person is able to accomplish without a second thought, is rarely casual for us. I sometimes have a serious case of envy when I look around the waiting room, watching the people who come and go with ‘normal’ problems.
Our latest misadventure was with the opthamologist on Friday – Em had to go in for her yearly check up. I had several important things I wanted to discuss and I was quite sure the topic of high intracranial pressure/ externally communcating hydrocephalus/Diamox would come up. I really wondered what he would make of it. It quickly became evident that I was utterly foolish to ever believe that he would listen to my concerns and that he might have a sympathetic ear for us regarding Diamox.
He was quite dismissive of the whole concept – flat out told me that he saw absolutely no signs of increased pressure and, if it were there, he would see it. When neurologists are worried about this type of thing in their patient, they send the patient to him and he ALWAYS sees it – IF it is there. He almost became a neurologist so he knows about these things.
Then, he told me I needed a second opinion regarding high intracranial pressure. When I told him Cincinnati Children’s was hit and miss for real EDS knowledge, he told me to just head to Denver or to CHOP (Children’s Hospital of Philadelphia) and I would find loads of experts who would be able to share their boundless expertise.
How does one even begin to reply to that….
First of all, we live in western Ohio. Denver is not exactly just around the corner, nor is Philadelphia for that matter. I don’t know what world he lives in where he thinks the average person can just take off to Denver to see a doctor who would be ‘out of network’ for our insurance and thus, we would have to pay out of pocket. Referrals, insurance coverage and money issues are very real for those of us in the EDS trenches. Unfortunately, the enormous medical issues that we are faced with do not magically increase our financial resources – funnily enough, they actually tend to deplete those resources quite rapidly. Maybe they didn’t cover that in his Opthamology classes. I wish I had all of the money in the world to throw at my daughter’s medical problems, but all the money in the world would be totally useless if there are no doctors who have real knowledge and real answers. Which brings me to the second point…
There are precious few experts on any aspect of EDS anywhere – including at the most prestigious Children’s Hospitals in the country. Just because this particular opthamologist thinks he knows all there is to know about EDS and was trained at CHOP himself, does not mean there is a stronghold of EDS experts hiding there. Or anywhere else, sadly. When you throw poorly understood neurological issues into the mix, I don’t think there is a single neurologist or neurosurgeon who knows everything.
Yes, there are a some doctors/surgeons who know more than others when it comes to the neurological component of EDS and are working to learn more but there also is a hint of that stereotypical surgeon’s arrogance that comes into play in some cases: We are the experts and we know best, so what we say is the absolute truth and you need to listen to us – check your opinion at the door. While I acknowledge that they are highly skilled and well trained in their fields, I can’t help but think that no one really knows much of anything when it comes to EDS. And anyone who says otherwise, is selling us the same cloth they sold to the Emperor for his new clothes.
So, anyway, this guy also told me that I really should consider having cervical fusion done on Em and that if the surgeon says it should be done, he has his reasons and I should listen. Cervical fusions are quite harmless these days and are not at all scary. I have to wonder if the surgeon’s knife were hovering over HIS child, if his attitude would be quite so cavalier. He also pointed out the dangers of Diamox and suggested a shunt instead. I found it astonishing that he would casually recommend the most invasive possible treatments while chiding us for trying the least invasive treatment. The arrogance of doctors never fails to amaze me.
I tried to politely express our concerns and how challenging our situation is, but he was too busy lecturing me to hear what I had to say. I wasn’t left speechless by his ignorance, but I may as well have been for all the good saying my piece did.
The end result was, he lectured me about following the lead of doctors who know more than I do and he totally blew off my real concerns that I was desperate to have addressed. So, instead of getting actual much-needed support and help from him, I got lectured and my concerns were totally ignored – the result being, once again, I am on my own to figure out the answers for my child. That is getting awfully old, to be honest with you.
Another doctor, who I really liked, goes into the idiot pile, which is getting pretty crowded. At least he has plenty of good company.