Neuropathy + chemo brain: Urgent request for expert consult

Lodewijk Bos (Twitter @ICMCC), is a good friend in Holland – my wife and I have visited him twice. (My US friends always wonder about the name – Lodewijk (“lodevike”) is the Dutch equivalent of Ludwig.)

Lodewijk has an extraordinary medical history – he theoretically shouldn’t be alive today but he continues to beat all odds. One factor has been his incessant research: an ultra-e-patient, multi-degreed (bio here), author of several books, publisher of the great ICMCC site on health IT (“compunetics,” actually), and editor of the Springer journal Health and Technology, he stops at nothing.

Well, Lodewijk is “Unhappy again,” as he puts it mildly, at the end of his rope again, this time with pain and chemo fog.  I can’t explain it precisely so please see his post, pass this around, and if you find anyone who might be able to help, have them reply on his blog.

A few bits from his post:

On July 2 I had surgery on my left foot … from there on it went wrong, seriously wrong. I was told I should not stand or walk on that foot for at least two day. And I was sent off, on foot. So by the time I arrived at the reception desk 5 floors down … I was given new bandaging and this time someone went to find a wheelchair.

Previous conditions and treatments have left him with neuropathy (nerve damage, causing continuous pain). This new wound wasn’t healing, so days later he contacted a previous wound nurse, who …

… suggested a new kind of bandage Promogran Prisma. And lo and behold, it seems to work. [But] my neuropathy worsened.

The open wound on top of my neuropathy was already hell, but that diminished considerably after a couple of days. However, after applying the new bandage, my foot started hurting much more, but above all, my chemo brain came back in full force. [It can recur years after chemo ends.] When I get out of bed I stumble, having to catch myself not to fall.

After 5 minutes that acute problem disappears (balancing problems remain however), but then the next one appears. My eyes start to spontaneously turn [toward the] nose bridge, as if I were squinting. Which makes concentrating a very complicated business. Combined with the physical balance problems, it leaves me, activity wise, almost paralyzed. Oh, and my tinnitus is worse than it has been for years.

I sincerely hope that the wound heals soon. … walking is no option, the wound is over 1,5 cms large. .. and if you know of any neurologist who might be knowledgeable about this kind of problems, please contact me in the comment field.

Here’s hoping our network of connections can help this time.