So many neuros, so little time. This reminds me of the siblings that are anxious to get to Mom first, the first version of "what happened" seems to have more impact does it not?
When many neuros first exposure to CCSVI is negative study articles in the publications they read, it makes all else after seem like so much desparate grasping to hold on to a dying theory. Of course we all know there's plenty more to come to the story, and are still forming the preface part of the book, not postscript.
My wife has NFS. So does my 1 year old son (presumably, due to indicators). The measurements on his head circumference grew at an abnormal rate between 9-12 months, our stellar, thorough pediatrician referred for immediate neuro consult and possible MRI. It is possible, though not probable, that a neurofibroma is causing his cranium to grow at a faster rate. I think he went from 80th to 95th percentile in 3 months.
Wife of course was understandably VERY upset, but I showed her my numbers, and my eldest daughter's numbers from those same time periods (9-12 months, my Mom kept records of EVERYTHING), and we both had a spontaneous spurt 9-12 months (height/weight) before leveling out. After much discussion I was finally able to convince her that the ped. doesn't have magical eyeglasses, I even did a perfunctory neuro exam on him myself (we know these by heart right?), Babinski reflex, whatever else I could come up with. All seemed normal. Growth, function, demeanor, all progressing nicely, nothing untoward whatsoever.
During the course of the visit, he mentioned how we would notice changes in his functions if something was going on neurologically, this spurred my wife to mention the familiar MS symptoms she knows so well with me, then of course CCSVI, Stanford etc. She said his ears perked up immediately, and he wanted to know more, was jotting down notes furiously, asking questions. Exploring. Where to find stuff on the web, all that. He asked about me, she gave him the thumbnail version, to which he replied “well then he got his veins treated and didn’t have MS in the first place right?”, “No” she said, he was diagnosed MS, got treated and has been medication and symptom free since.
This was not a “hey honey while you got the neuro cornered” visit, it was about my son, but since he passed all his tests with flying colors, there was time for small talk before leaving. He *may* get an MRI in a year, but the neuro was reticent to sedate him for the test, so just monitor for changes, see how things go and I think his growth numbers will level out in the coming months.
Overall, he seemed very receptive, and I’m proud of Suzy for having the presence of mind to at least give it a mention while there. You go girl! One doc at a time…..
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap