Saturday, April 11, 2009

Cervical Disk Fusion and Web 2.0

I am on the recovery side of a six-month health issue that lead to a surgery to fuse two disks in my neck. Being informatics oriented, I immediately dove into the Web to learn about my symptoms and possible causes, to organize my information resources and to communicate with some of the doctors and friends. Being a(n old) student of Web 2.o, I can now assess the role of the new information tools and methods in dealing with a true real-world problem.

The Health Problem: Since November 2008, I have experienced intense muscle pain in my legs, fatigue and general body weakness. While I continued my daily routine, work and also tennis at a very low level, my mobility and well being in general was not good. Through the family doctor I have been tested for infection, blood, TB, etc., all negative. By the third month I saw a neurologist, cardiologist and a throat specialist but still no diagnosis. By then, I also engaged my close friends in Med School who could not help directly but insisted that I keep detailed log of the symptoms, circumstances, i.e. to gather as much data as possible, which I followed with diligence.

Suspecting a neurological cause, in February 09, I decided to seek a second opinion from an older, more experienced neurologist. He preformed a detailed, hour-long test of my sensory and motor responses and asked many questions, for which my 'data' gathering came in handy. Based on his tests and my data, he concluded that the neurological indicators can not be explained by common disorders like stroke, so he said: Why don't we have a look at your neck?

After the neck MRI, he called me Friday night at 8 PM: Dr. Husar, we have situation here. There are degenerative changes of your cervical spine resulting in spinal cord compression at C4-C5 and C5-C6. Don't lift anything heavier than 5 pounds and don't wrestle (wrestle?) with your wife! He suggested that I see a neurosurgeon. Given the pain and the graphic MRI, I was looking forward for the surgery, which had the primary goal of preventing further damage to my spinal cord. The Anterior Cervical Discectomy and Fusion (ACDF) at the and of March 09 went well. There was modest improvement in the leg pain and coordination within a week. However, the degree of long-term recovery will not be known for about 6 months.

The Role of Web 2.0. Illness is an intensely personal matter, so publicly sharing such a story is a personal choice. My choice to post was inspired by several blogs, in particular the post by Douglas Bullard, who described his neck story that sounded very familiar and helped me dealing with my 'situation'. So, the blogging part of Web 2.0, the sharing of ideas and the associated cultural changes was helpful. That's pretty much it. In retrospect, the technical information I gained from Web 2.0 had marginal utility. Most of the searches to the medical sites were superficial, confusing and some even misleading. Delicious was somewhat useful for organizing my bookmarks. However, virtually all the 'actionable' information for my case came directly from humans and not from the web and social software. The recommendation to seek and obtain a second neurologist opinion and the suggestion of a specific neurologist came from friends. So, it may be good to continue asking: What/when/where are these new web technologies good and what/where/when/ are they not.

P.S. April 09. The 4-week post-op checkup went well, so is my progress in strength, coordination and overall stamina. The next phase, the spinal cord decompression may take six months. In the meantime, the ole body starts to feel right again and I am allowed to do any activity 'but use common sense'. Oh, and here are pics of my new neck jewelery.
P.S. May 25, 09. Rehab and recovery on (slow) track. Just graduated from rehab. Walking hour a day, light jogging. No leg pain, leg muscle about 90%.
P.S. Oct. 09. Summer 09 went by with intense and regular rehab and there was continuing improvement in leg-coordination, mobility, and stamina. By the end of summer I could run for a km and play 'gieser' tennis. The 6-month post-op checkup with my neuro-ortho surgeon in Oct 09 has confirmed my progress. The upper disk was fused, but the lower disk (C5-C6) has not yet fully fused after 6 months. Nevertheless, the doc discharged me saying that I can do whatever.. jogging, chasing grandkids etc. .. Now, after 8 months , I just regained my pre-ACDF position on the tennis ladder in the club, so life is good and fingers crossed.
P.S. Sep 2011. 2.5 years after the neck fusion I am fine, life nearly back to pre-op state. Tennis is back, some jogging ...but still a bit clumsy, slower, partly for being 70, not 67. The most intriguing thing is that I feel still continuing signs of recovery, mostly in physical endurance.