Survival (in months) of those pacing ALS patients we've lost this year:


all 23:median38

14 14 22 25 27 27 29 29 35 37 38 38 40 41 48 52 55 56 56 57 63 81 84


bulbarOnset

14 25 38 41 52 56


unknownOnset

27 29 35 37 38 40


infoNeeded

14 14 27 27 29 29 35 37 38 38 40 48 56



dataComplete

22 25 41 52 55 56 57 63 81 84


Thirteen patients have one or more unspecified dates (usually onsetDate). Their survival period is likely six to twelve months or more the currently specified here.


In this small group of bulbar onset also sees median of 38, much higher than medians of 20 (pre-riluzole) and 27 (post-riluzole). Medians for 'complete' sets have tended to be less than 36 months, here we see 38 plus likely at least six months. Note the dataComplete set shows median as 55-56 . . .19 to 20 months better than upper level studies (they sometimes show as high as 36 months) . . . even though thirty percent of cases are bulbar!


I believe we will see further {modest} improvements. Of the 150 patients I have found, I saw three blood clots reports and one stroke after implant. One of the blood clots was fatal. The investigation reported no link to the pacer though and I have seen no report regarding FDA changes to the requirements for the procedure.