The Alarm goes off at 5:45 AM, and by 5:50 AM I am on the road, literally. The snow is still piled high here but the roads are clear, sometimes, as I begin my training for the 25K Riverbank Run on May 14 and hopefully the Chicago marathon after that. Jogging is a great way to clear your head or let your mind drift as another mile passes by. One of the things I rarely think about now while I am running is my dystonia. Of course I understand that I still have dystonia and that it probably won’t ever go away but that doesn’t mean it has to control me. Last July I had Deep Brain Stimulation (DBS) surgery which explains why I can now run to the point of extreme exhaustion and still not be completely embarrassed by the stares I would draw from my odd, uncontrollable facial movements. Yet, even if I had not had the DBS done my life would be far from over.
I had first thought about DBS surgery in July of 1999. I went to NYC to discuss the then still experimental for Dystonia procedure with a neurologist. As part of an experimental study the costs would be waived but there were catches. Big catches for a very active 28-year old man; very limited physical contact being a major factor that meant no more downhill skiing or basketball. Of the six they had done up to that point, 3 of them had to have surgery again to re-attach the leads. Another catch was going to Manhattan every week or 2 for a year for checkups. My aunt was very gracious and said I could stay with her in NJ but it still meant giving up my job. I opted instead for a pallidotomy on the left portion of the brain. The results were not what I’d hoped they’d be. One reason may have been that I needed both sides done, not just the left. There really could have been countless other reasons for the poor results but I kept looking forward.
I went to Chicago to inquire about DBS surgery there in 2001. I obviously told them about the pallidotomy and the results. One option was to do DBS on the right side of the brain first and then see. But as I thought it over I decided to wait for the surgery which ultimately turned out to be a great decision because several weeks later I flew to Australia where I met my wife, Robyn and today we have 2 beautiful daughters!
I went back to Dr. Rezak and his staff in 2003 and decided it was time. We agreed to try a bilateral DBS rather than 2 unilaterals, but if anything was going wrong or even the hint that something could they would stop after one side was done. For the surgery I was to be placed in a halo (which only seems fitting for an angel, right?) and had to be awake enough to communicate with the doctors during the surgery. My recollections of that are very vague; although I was awake I was very groggy during the surgery. Dr. Jeffrey Cousins did great work and was able to get both sides completed the same day. It was an extremely long day for my wife and the doctors mostly; I got some much needed rest.
And the torture was only half finished. The next day I had to have the pulse generators installed. Well, the hard part for the surgeons was complete and now they only had to zip my chest open and slide in 2 generators. That went very well as expected. Recovery at the hospital went very well and I was headed back to my other aunt’s house just outside of Chicago by Thursday evening looking very different than when I left there Tuesday morning. I now had 2 sets of staples across my chest and 2 sets in my head as well.
They had all the hardware installed but it was not yet turned on. I think they wanted my body to adjust to having new equipment and make sure nothing was going wrong in that area before they added another variable of turning it on. It was a little awkward explaining to friends and co-workers what I just had done and then saying, “I don’t know yet, they haven’t turned it on yet,” when they all asked if it was helping. It was turned on a month later. I did have to return about an hour after it was turned on because of some bad side effects but they were taken care of that same day. I have been back nearly once a month to have some more adjusting and fine tuning done. As I found out the first time, the body can only take so much change at once so I am increasing gradually.
It is six months following surgery and I am doing great! I ran 5 miles yesterday and kept a pace I would love to be able to keep up for 15.5 miles on race day but it really doesn’t matter. What matters is that I am out there. For too long I have been merely surviving; it is time to start living again.
P.S. I would like to thank all the members of my family for their full support in all I went through. My parents, grandparents and all my aunts, uncles and cousins were always there for me dating back to the onset of the dystonia in the early ‘90s.
UPDATE: January 2008
Since my DBS surgery…
I am often asked that, and for the first year and a few months, it was great. I ran the race I always said I was going to do, the 25 km Fifth Third Riverbank Run in Grand Rapids (a very big run locally getting about 5,000 runners a year) and continued on and even did the LaSalle Bank Chicago Marathon that October. The running wasn’t against my doctors orders but I did have to warm them to the idea. I simply said I am going to do this much pounding on it anyway. What is the difference if it is over 3 hours or 3 years?
So, it was very ironic that my problems started a good month and a half after the race was over and I had stopped running, that my problems started. Through no fault of my running that my left side DBS (I had had both sides done) was malfunctioning. It felt like someone was turning it off and on again. I went to Chicago once to have it checked out and they said it was fine. I went back a few weeks later convinced something was wrong and they put the device up against my chest to read and adjust the device and again it was fine. But, right before she took it off, she noticed the readings go haywire. So she put it back on my chest and this time instead of taping it to my chest she held it there with her hand and manipulated it around and sure enough when she moved it the readings were going wacky again. After more manipulation and consulting with the Neurologist it was decided that the impulse generator and wire had to come out. They would leave the electrodes in place hoping this would solve the problem without actually going into the brain unnecessarily.
This was the prudent thing to do – open the incision in my chest and behind my left ear -slide in a new impulse generator and hook it up to the existing electrodes. In November of 2005 this was done but to no avail. The only thing to do now was replace the electrodes. Slight hassle but really no harm done – alls well that ends well, right? – Not so fast, my friend!
One month passed, then two months and, just when I was resuming a normal life, infection reared its ugly head. Always a danger with any surgery, infection is rare and I had been through so much that I took it for granted. It was very weird because I showed no signs of anything being wrong until 3 months post surgery. Driving home from work one day it was actually sunny in Michigan so I needed sunglasses as I drove into the sun. I remember them not fitting correctly; they were rubbing behind my left ear. I felt the area and it wasn’t the sunglasses but rather a lump on my incision and it was slightly warm. I came home and mentioned it to my wife, Robyn. She immediately called the doctors in Chicago and must have left a voice mail with someone. I thought she was over-reacting and didn’t really pay attention after I told her. The nurse called back while Robyn was at her college class and said come down to the Northwestern ER tonight. I argued with the nurse but she was insistent that we had to come that night. I reluctantly called Robyn and we packed the car quickly (no easy task for Robyn when you have 2 kids still in diapers and a patient who does want to go!). We get through the ER and into a room slightly after midnight only to have the neurologists come around the next morning and say “it looks fine and he isn’t running a fever so go on home.” I was fit to be tied! This was Tuesday morning.
Thursday morning I noticed some redness at the incision site on my chest. There was NO way I was going to tell my wife about this! Friday night I was getting into bed and slightly surprised myself when I removed my shirt to see my glowing red chest. I couldn’t resist and said to my wife, “Hey, I look like E.T!” She didn’t find it funny and again got immediately on the phone to Northwestern Hospital. At least this time the Neurosurgeon on-call said come in tomorrow and it will have to be removed. It was removed that Saturday. He was not my regular surgeon but a very nice guy and discussed the procedure with me and how close I was to brain damage or even death. Apparently the infection started behind my ear, went down to my chest filled that area and went all the way up the wire to the head and needed only to travel down the electrodes to the brain causing real havoc. At the time of the surgery I noticed the incision on the top of my head was a little swollen and warm to the touch.
To make sure all the infection is out of the body they wait several months before attempting to put this DBS back in. I got to endure all the fun of yet another brain surgery. All this time the DBS in the right side of the body is working fine (and continues to this day to be fine – knock on a big piece of wood). Once again the Neurosurgeon (who now has a boat named after me for the repeat business!) does a fine job of getting the electrodes in place and the impulse generator hooked up and running. And within several weeks to a month I again notice redness but this time it is at the incision site on my head. I have now learned my lesson (my head isn’t as hard as it once was with all the holes and all.) and am paying very close attention for signs of infection particularly on top of the head since infections go down first which is what I learned.
I go to my Primary Care Physician’s office to see if I am being paranoid now or if it really is something. Again I get “it’s nothing, go home, take 2 aspirins and don’t call me in the morning.” And once again about a week later I am back in the same doctor’s office. This was after I went for my weekend runs and returned with a droopy eye, disgusted and/or in denial. I let me wife worry about it as I went to church, thinking, “Why is everyone looking at me a little funny.” I got home to find out my wife has had a huge fight (something she never does with a stranger) with the Northwestern Neurosurgeon on call. So instead of Chicago I go see my local doctor again. I get my actual PCP this time. She looks at it and without even saying anything to me is on the phone to a neighboring larger city hospital to the office of the main neurosurgeon there. Of course, he says come on in, let me have a look-see. He basically says it must come out but not immediately so he gives me two options: 1. He could take it out right there and then, or 2. Go to Chicago and have “my team” undo it yet again. I chose Chicago and I got the feeling this doctor was relieved I did even though he would never admit as much. Besides, who knows my brain better than this Chicago crew by now?
I got to Northwestern, my neurosurgeon is away at a conference for a week, and the on-call neurosurgeon sees me in the ER, the very same one my wife loved so much, the previous neurosurgeon had left for a different hospital. For the record, after meeting this guy we both now held my wife’s original opinion of him! I got though the ER and he isn’t sure what to do either. We are then introduced to a new doctor, the Infectious Disease specialist of Northwestern Hospitals. After some discussing with my wife we decide to leave the DBS in as long as possible and try to fight the infection knowing full well that at any moment any number of doctors could say, “It has to come out, and now.”
So there I sit in a Northwestern University hospital bed for 5 days hooked up to an IV of antibiotics until my neurosurgeon returns with the infectious disease specialist explaining the dilemma I begrudgingly knew already, that everything is stable now, while I am here but sometime I have to leave. Then what? Meanwhile they are still trying to identify this thing. It has only been labeled an infection because it looks and acts and reacts to antibiotics luckily, exactly like an infection. Going on sound medical theory, if it looks like a duck, quacks like a duck . . . But they do know one thing for sure and that it isn’t a staph infection like I had several months earlier.
The Neurosurgeon returneth! Only to come to the same conclusion as the rest of us – let’s try everything we can before removing it again. We finally agreed to a plan of attack which I, or my wife, probably even though she is much too nice to have admitted, we’re not too thrilled about, but we both did agree it was the best for my health. A homecare nurse would come and set everything up in our house and show Robyn how to hookup the IV line through a PIC line in my arm. It wasn’t as bad as it seems but it was a lot of work and very time consuming. With both of us working yet and 2 small children to care for I am still amazed we lasted through that! I need the IV hooked up twice a day for 6 weeks and a nurse would come once a week to draw blood, change the dressing and give me my supplies for the next week.
Just before my most recent infection I had been named a global hero, never mind how far from that title I held felt in the hospital, and during the six weeks of homecare, by Medtronic, Inc. They are the makers of the DBS device and new sponsor for the Twin Cities Marathon in Minneapolis-Saint Paul, MN. Due to the infection I had to downgrade from the marathon to the shorter run they were having the same day called TC10, a shortcut to the Capitol, a beautiful 10K run from the Metrodome to the Capitol building in Saint Paul. Even this was a real stretch seeing as how I could not train with the PIC line in. I was instructed not to get it wet and it was due to come out the Friday before the race. After some recalculating, the doctor now included the week in the hospital as part of the six weeks. The line would be removed a week earlier and give me a full week to train!
I am not sure if this helped or hurt my health. On the one hand I was doing everything right because I didn’t want any extra time on this IV; on the other I was running 10 miles, thereby taxing my body and especially my immune system so soon after coming off the antibiotics. Either way it worked out because I had no trouble when I switched from the IV to oral antibiotics. I finished the race; I didn’t win though with my wife ready to dial 9-1-1 at any moment! But no need as I finished in great health and we had a wonderful time in Minnesota. I just wanted to say “Thank You” again to the great people at Medtronic for all they did for us that weekend.
I continued taking the oral medication into 2007 and as I was training for yet another marathon, this time the Rite Aid Cleveland Marathon. The only twist this time was I was running the 25K Riverbank Run 8 days earlier. I would have preferred 2 or even 3 weeks between 2 races of that length but I completed both races in decent times and only calf cramps at mile marker 21. And, after this race I came completely off the antibiotics and am still doing fine with 2 more marathons under my belt now – The Towpath Marathon in Cuyahoga National Park (between Cleveland and Akron) and the Grand Rapids Marathon.
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews