9/26/11 6 weeks are up, time to get going

Last Friday was 6 weeks postop.  The neurologists are happy and Dr. Stone, my vascular surgeon, says we're good to go bungee jumping if I want to.  Now, I'm not so sure about literally jumping off a bridge attached by nothing more than a shock cord, but I do have some items on the agenda to get rolling here.  First up this weekend was a little motorcycle riding.  A group of people we know rented out the Sandy Valley Motocross track on Saturday night for a birthday party, so I thought that would be a good time and place to start the exercise.  

While the 23 year olds and others with some skill jumped their way around the track, I putted around as best I could given a 6 week postop absence of activity.  I rode both my 525 dual sport and my 300 2-stroke (both KTM's of course), to just see what the differences and similarities were.  The 300 is so much lighter and handles the ruts betters, but the 525 just has so much more torque for getting going on the low end.  I got about 30 laps in for about 90 minutes of exercise.  It felt good.  I sweated quite a bit and it felt great to just get out and do something physical.  

Sunday came and my arms and neck were really tired and sore, so I guess that's a good thing.

Got up this morning and rode the stationary bike for 20 minutes then walked down the street for about 2000 feet.  In the past, after the bike I have had to sit down and get some strength back, but today I could do both reasonably well.  I still have some wounds in my leg not healed yet though.  Of the 15 incision areas, I still have 3 that haven't quite healed, so I'm not free to hit the pool yet, but I am looking forward to that too.  

For the next few weeks the goal is to get off the Pradaxa anticoagulant (3 months postop) and slowly get some exercise going, then when the wounds are healed, increase the pace.  I'm sure when the Pradaxa is out of my system the healing will increase even more, especially the wounds.  

9/21/11 Shock the Neurologist

Mayo Hospital from above

I went to the Mayo Clinic yesterday for a follow up with Dr. Wingerchuck, my neurologist.  We're now about 5 1/2 weeks postop and he wanted to see how I was doing from a neurological standpoint.  I gave him the discussion about the surgery lag still a little on me and all the wounds and stitches haven't healed yet, but he wanted to see how I was progressing - or IF I was progressing. 

Both Dr. Wingerchuck and his fellow put me through the standard tests.  Eyes, hands, etc.  When they got to the left leg, which has been the weaker one, they were both taken aback.  I can lift my thigh up from seated position, extend my lower leg from seated position, and hold my foot up when resisted downward all significantly better than before.  I also walked for them and they noticed a significant improvement in my gait.

Dr. Wingerchuck would be a great poker player.  His demeanor is tough to crack.  He's a serious, educated doctor with enormous credentials who understands the disease as well as anyone, and he doesn't get too excited about things.  So to get any reaction from him is significant, and he clearly acknowledged I was improved.  It was quite a moment for me. 
I asked them for a report to get to me as soon as possible so I can restore my pilot medical, which they said they'd do.  But I also asked them to really look into the CCSVI phenomenon from a number of different angles.  I reminded them of all the people from Canada and the US who are travelling overseas for a chance to see results like I have, and that the doctors in some places are refusing to address it.  I told him that, at least based on my results, that the relationship between vascular circulation and neurological symptoms is real, which he agreed, but Dr. Wingerchuck appropriately replied by stating it was his job to be one of the skeptics about these things, and that further studies were needed.  I agreed, but said to him that Mayo Clinic is one of the few places in the world that could bring this to the mainstream. 

In any event, back to my condition.  I walked a bunch yesterday and my leg worked quite well. 

It's amazing what the slightest improvements do for the psyche.  Hope goes a long way in this world, and for me to know unconditionally that I have turned the corner in my battle makes my life carry that much more meaning and significance.  Family and friends love me anyway, but this is about my personal battle, and when I feel progress, I feel hope, and that hope turns to confidence.  I so wish for others with this disease to be able to feel it.

9/14/11 Still some Surgery Lag, but doing well

Feeling quite good the past few days.  4 poops in 2 days, none assisted, is good.  I'm about 4 1/2 weeks postop now and of that 30-odd days, I have not had to use any form of assistance for 27 or 28 of them, so there is definitely no placebo effect on this part. 

My scars are healing......all 17 of them (15 in the leg, 2 in the neck), pretty nicely.  There are a couple taking longer because every time I walk it tugs on the area a bit more than the others so they clearly won't heal up as quick. 

Walking is better, breathing remains excellent, heart in check, poop better.  Only thing is the urination which has essentially no change, though it does feel now and again that the pressure is better and I'm holding more between visits.  That one's a little tougher to quantify, so I won't call that yet. 

It's so strange thinking about why blood flow would help this.  It makes me think about what MS lesions are.  Are they living and growing or are they dying pieces of the myelin sheath?  I theorize they are dying parts of the myelin as a result of a lack of oxygen perfusion due to blood stagnancy. CCSVI could possibly be renamed to CCSVS with the last "S" meaning "stagnancy."

Oxygen perfuses every millimeter of our bodies which is one reason the arterial side of our circulatory system is under such pressure. It is to ensure the oxygen delivery to the furthest reaches of our bodies from the fingers and toes to our brains. The key to this theory is the high pressure perfusion is complimented by the low pressure recovery of the deoxygenated blood. As the oxygenated blood is fully delivered to the far reaches there is a brief moment where is goes from high pressure to low pressure as all of the oxygen is released into the organ. At this point the blood is merely a carrier of the spent, deoxygenated blood to return it to the heart/lung system for reoxygenation

Stagnancy in the short term is not a problem. Veins have a unique collection and delivery system that allows the body to function and divert even when blocked. But long term stagnancy of venous blood in areas of the body especially the brain leads to the gradual decline in functioning and health of the organ that needs oxygen to survive over time.

Following this theory, in the case of MS that stagnancy over time leads to the degradation of the nerve and myelin coating. Because MS symptoms are so random in nature and the affected nerve may control anything from the legs to bowels to arms to vision, the oxygen disruption could happen anywhere within the brain barrier leading to the nerves.  Why random?  Nerves are microscopic and any one or combination can be affected by the stagnant, deoxygenated blood.

In the meantime, I'm just happy I'm improving......can't wait for all the scars to heal so I can get back to exercising.