Stephen Balbach

July 27, 2009
Ashton, MD

Dear Friends,

I'll be having surgery early Wednesday July 29 for the spinal cord and wanted to let everyone know what's happening.

The condition is complex (tethered cord) but it's probably easiest to think of it as a non-cancerous tumor in the spinal cord [L4 level] which is causing progressive injury making it difficult to be independent. The neurosurgeons think they can fix it so it doesn't get any worse, and possibly improve. Surgery on the spinal cord is inherently risky, but likewise the risks of doing nothing are inevitable, so I am going for it and will soon "sit stand and walk with perfection and ease" (my motto).

The surgery is at Johns Hopkins using some nifty high tech equipment and a world class surgeon who trained under the doctor who pioneered the technique 15 or 20 years ago. It's this Wednesday July 29th at 8am and they expect a 5 hour surgery (for me 2 seconds), 5 day hospital stay (1 day icu) then 6-8 week recovery home.

I'll try to send out or post another update from the hospital Friday or Saturday with how it went - thanks as always for your support and positive thoughts,

Stephen

August 3, 2009
Johns Hopkins
Baltimore

This is the first update since the operation about exactly 100 hours ago, the first time I could get on a compter. The operation wasn't as easy for the surgerons as first thought. Most of the problem was removed but some was too dangerous and remains. Due to the extensivness they had to "manipulate" most of the spinal cord roots which caused leg paralysis and other problems, the permanancy of which won't be know for months, but evoryone is hopeful that with time and therapy the condition will improve. I'll probably be living in an in-patient therapy hospital for a few weeks or month, it's going to a long road. I'm still tired and on a cocktail of drugs so probably will be out of it for a while, we're hoping I can leave the critical care part of the hospital by the end of this week, and find out then where my next home will be and take each day as it comes. Thanks for you support as always and remaining hopeful of the best recovery I'll keep this journey updated as it transpire.

Stephen

August 5, 2009
Johns Hopkins
Baltimore

Two days later and some disjointed Oxycodone inspired thoughts: this morning I was challenged and surprised by the Physical Therapist to be in a wheelchair and for the first time saw the hallway and nurses station outside my hospital room door, where I have been encamped for about 6 full days. The natural sunlight in the hall gave everything a vibrant sparkle and crispy clarity more real than real. They removed the various input and output tubes so I am now mostly on my own in terms of fluids. The pain killler side effects are spooky - the usually quiet wall clock tocks loudly with every second change, and the robo-breathing blood-clot preventing leg cuff sounds like the distant whaling of a horn in fog. This makes it difficult to concentrate so I'm staying at a fairly low dosage level, which occasion moments of lucidity that would enliven Dr Jekyll. A nurse Danielle brought me fresh vegetables, grassfed organic beef and rice which our hallway cook stir fried. This was a carrot-stick reward for something I did two days ago, while in worse shape, which she promised if I would meet a goal, but I no longer recall what it was for, but it was really nice and the sort of humanity which makes a difference in health which has no real cost. I've yet to meet anyone at Hopkins who I didn't like or found remarkable in some way. That's all for now should have some news Thursday about where I'll be moving either Thursday or Friday.

Stephen

August 9, 2009
Shady Grove
Rockville

I have not updated my status for a bit due to a laptop crash. The state of Maryland has paid for me to be institutionalized [enrolled] in a facility [rehab center] where I am being rehabilited for re-entry into society as a productive member :) It's Shady Grove Adventist spinal cord injury specialists. I am the youngest inmate, or patient, most of the rest are senior citizens in stroke recovery.

This is not a place of quiet pasture and maintenance but an intensive physical work regime to regain independence. It's 3 hour/day therapy in a central gym area. I'll stay here as long as they think it will help but they estimate 2 to 3 weeks. I am seeing some improvements and probably will continue to improve for 6 to 12 months - nerve recovery is just not that well understood and I know 100% certain time is on my side. It's not easy and my base recovery from the surgery is still ongoing so some days it feels like I lose ground.

The nurses are mostly from equatorial French countries - Cameroon, Haiti, Congo. It's an aviary of colorful tropical birds flying about the white sheeted beds below. I know how desperate the conditions are in those countries, birds fly before a storm, how this job gives them a second chance for a better life, so we are all in the same situation; for now this tropical aviary is a home of sorts.

Stephen
cell 240-364-4438

September 7, 2009
Home
Ashton

It's been almost a month since I last updated and I appologize for not being more communicative, the latest news is as of September 2nd I am back home on my own, out of Adventist Rehab in Rockville (which I recommend highly). I am in a wheelchair and learning how to do basic things like cleaning dishes, cooking, ordering grocery from Peapod (which isn't walking dependent).. I am able to take short walks with a walker with great effort and pain.. the surgeon predicts I will walk again with a brace and cane.. there is a 6 month window after which it becomes less likely, so I have till Jan or Feb to get walking again, every day I exercise 4 or 5 times and keep pushing forward.

Stephen