I keep trying to remind myself to note the several cases were remarks exist regarding incomplete happiness with the pacer . . . these are:

regarding Harrell of PatientsLikeMe.com by their care provider.
regarding llbjgb of inspire.com by their care provider.
by Susan F., an M.D. regarding their spouse in response area of a notice.
(will try to rediscover the notice).

and

Knudson in http://dailylifewithals.blogspot.com/
noting '. . . sleeps better without the pacer . . .' but uses during the day. In contrast, "Tom M" of PatientsLikeMe.com could not use the pacer during the day (due to asynchronization issues) but was able to use while sleeping.

Many patients have commented on discomfort associated with feeling electrical sensations during the period the pacer is being adjusted but I know of none persisting after calibration was complete.

The DiPALS report refers to this paper:

Does surgery accelerate progression of amyotrophic lateral sclerosis?
http://www.ncbi.nlm.nih.gov/pubmed/2...?dopt=Abstract

by Pinto et alia, wherein some fifty patients experience noticeable drop in ability shortly after surgery . . . of these approximately two thirds were for surgeries appearing to be unnecessary because the condition the patient was believed to have before the surgery was not found to be the case during surgery. In my experience observing the remarks of patients suffering from ALS I recall several patients who noted a sudden change in the rate of their regression; HarryAZ of BrainTalk communities after they underwent an umbilical cord blood procedure (the dozen or so fellow patients who also underwent the procedure did not). A patient who was participating in a fundraiser by 'driving' the full length of New York's Long Island in their power wheelchair while nearing the end of the trek. Another I don't clearly recall at this moment . . . resulted in my hypothesis patients under a drop in their supposedly 'linear' regression for some unknown reason - (currently unknown). Patients often report a 'trigger' to their ALS symptoms. I further hypothesize patients didn't need the surgery but may have felt they did due to this 'drop' and thus the Pinto report may have gotten the 'cart before the horse' so to speak. MORE on this issue later.

I am hoping we will hear of Knudson soon, they were planning on moving into their new home and where having trouble with their computer's adaptive components (as way too many patients have). We have not heard from them since New Years Eve.