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.

Busy times: the other day I asked about endometrial cancer, and now I’ve had two requests for lung cancer help in the past three days.

I gather all these answers on my Patient Communities page, as best I can. (Just fixed the link – 9:18 ET)

I know there are many communities for lung cancer patients, but I don’t know where they are. So let’s get going, people: let us know what you know!  Even the obvious ones.

I know there are some on Inspire.com and ACOR, but I don’t have the URLs.  Paste ’em in here and it’ll be easier for the next soul in need. Thanks!

A friend of a friend writes:

I was recently diagnosed with stage III endometrial cancer. Although my doctors are all extremely competent (a top-shelf cancer center), it is disappointing to discover that they do not always have crisp answers and the tests are far from accurate. I had no symptoms until recently and pre-surgery tests indicated I had pre-cancerous cells at worst. It wasn’t until surgery that they discovered “extensive” cancer in my uterus which has spread to the lymph nodes.

We now have a plan which seems to be pretty standard (Radiation and Chemotherapy), and my doctors discuss treatment as though they aim to eliminate the cancer entirely. But stage III doesn’t always have a happy ending and I want to make sure that I do everything in my control to effect the best possible outcome.

Any suggestions for e-patient resources? Best places to learn  about the condition and treatment options? A good patient community?

Addition 4/26: Late in the comments, it turns out this was a wrong diagnosis, but the nature and quality of the discussion isn’t affected by that. Take a look at the issues that came up in my initial research and in the comments. Fascinating!

A friend writes:

Dear Dave,

A friend of mine has to decide if to do a spinal stenosis surgery.

Is there a solid resource to research if that’s a worthwhile option?

Any help, anyone?

Below is the result of a half hour of generic searching. I’d really like to supplement it with advice from other patients and clinicians.
__________

As generic starting info of the “Web 1.0” variety (“read-only” encyclopedias), here are the usual candidates: [Read more…]

Boy, social media is amazing. This just happened on Facebook.

(And, later tonight someone pointed out that it’s a 2005 article based on a 2003 speech! So I edited this post. For some reason people are circulating it again.)

An amazing development in my RFP quest, first pointed out yesterday by Nick Dawson; the link was shared by Giovanna Marsico from Paris:

I had no idea that Don Berwick, head of the IHI, has published in 2005 what HE wants from providers for an upcoming surgery, like I did! Except his is in the Annals of Internal Medicine http://www.annals.org/content/142/2/121.abstract.

Look what he says in the abstract: [Read more…]

A relative writes: “Anyone out there know anything about treatments, specialists, community for someone recently diagnosed with paraneoplastic cerebellar degeneration, especially in the Boston/New England region of the US?”

The condition’s Wikipedia page says: “It is believed to be due to an autoimmune reaction targeted against components of the central nervous system (specifically Purkinje cells and large brain stem nuclei). It is thought to be caused by an anti-neuronal antibody…”

I didn’t readily find much on my Patient Communities page, but I hope it will grow. I did find these search results on MedHelp.