I have had DBS hardware, wires, batteries in my body since 09/29/04 and because my left battery is at such a high voltage 3.8, I have to get it replaced every 11-13 months – which means I’ve had 10 battery changes. Understand, DBS is not a cure but can certainly curtail symptoms and improve your quality of life. In addition, the programming of neurostimulators is an art that skilled Nurses, Medtronic experts and Physician Assistants have the skills and experience to control but in reality it’s almost like hitting the lottery when going through each patients programming stage. In my case this process took just about 3 years which got me to a point of living or trying to live a purposeful life.
My last battery change 1/14/14 seemed to go well, surgery 7AM, recovery 10AM, lunch in NYC noon, back on the road, 1:30, conducting varsity girls basketball practice 5PM, unbeknownst to my players. 4-5 weeks later I noticed a lump on the back of my head where the wires run to my brain, slight puffiness where the new device was implanted and a painful pulling of the wires as if they were being ripped out of my skin. Sounds painful and it was somewhat but dystonic people have a high threshold for pain so we classify pain differently. After a 5 min. examination (Yes, 5 min examination) it was determined there was no infection – just keep an eye on the stimulator. Life goes on – my team finished an amazing season, winning the league championship, (2nd ever in school history) 18 wins and our first win in district play. We had the player of the year, and several all league players – all in all it was an Amazing Year! But, that pain, swelling, DBS stuff was getting worse. Made another appt. to NYC and guess what – Now I have an infection April 1st (and no April fools day joke) Hello Genius thats what we thought last time. Hence, we lost 5-6 weeks of getting treatment. I was furious and grew more aggravated when the doctor explained his 4 options. I couldn’t get out the door quick enough. The one great thing about being a dystonia patient for so long is having Great connections all over the country and access to the Best of the Best doctors. After calling my guru neurologist in Minnesota and DBS Programmer – they said get out of NYC now and get your butt to Boston ASAP. They had already phoned one of the top Neurosurgeons, Dr. Ron Alterman at Beth Israel Boston – and thoroughly briefed him on my condition. Drove to Boston the next day, met Dr. A, got evaluated and we all decided on the plan of attack. (This all occurred in a 36 hour time period)
Surgery Thursday April 3 8AM to remove infected device and wires, recovery was rough because they had to pry the wires from the skin inside my neck and head which had been embedded for 10 years. Now I’m living without the DBS stuff that gave me my life back. Additionally, have a pick in my left arm to administer an IV everyday until May 16 which means 42 days of antibiotics to rid the infection. After this 7 week period (Still no DBS stuff) I have to wait 30 days to make sure infection doesn’t recur. So tentatively scheduled for June 17th to get Neurostimulator placed back in my body to help with this dreaded dystonia.
Life goes on – We were scheduled to attend the final four in Dallas TX, thank goodness for trip insurance and thanks to the NABC for helping with tix. exchanges. We watched from the 11th floor hospital room 1/2 block from Fenway Park. Trying to have some fun I started a .25 cent block pool. Didn’t go over to well since most patients were recovering from brain surgery, trauma, or other serious conditions. So I pulled a MacMurphy (One flew over the cuckoos nest) and got the nurses and anonymous doctors involved. Needless to say the pool was filled in no time and there was a buzz now to watch the games.. The buzz was apparently too loud because I was in the process of losing the first of my 3 roommates that night. But we all had fun. Roommate #2, didn’t speak English but kept pushing the nurses button and requesting morphine and oxycotton – I swear there was a drug smuggling ring going on – He was gone within 12 hours probably from the drugs? Roommate #3. a young kid in his 20’s came next. His first question, “Hey do you guys smoke?” He lasted a few hours – got caught smoking in the bathroom for what seemed like an hour and escorted out.
So after spending spending 5 days, several roommates and the loss of my beloved neurostimulator, it was time to head home. With the collaboration of several doctors a prescription plan was adopted to get me to the June 17th Day. Artane was the main med – Artane works but causes severe loss of short term memory. So I have to write everything down but the problem is I forget where I write the important stuff. Other side effects from Artane, Valium and Klonopin is the Zombie effect. These work somewhat but dystonia comes back full force. What does that mean = Imagine laying down in your driveway and a mack truck running over your head then backing up again and again while someone takes a sledge hammer to the side of your head while randomly firing a pellet gun to the back of your head. So, once again, I’m not sure dystoniacs are tougher or able to absorb pain better but I cringe when people complain about headaches, or athletes complain about tough practices. Off the soap box but thought it was my responsibility to see into the life of what happens with dystonia, infections, and getting far away from doctors who are either pre-occupied, not well versed with dystonia or you just don’t trust their plan(s) of action. Trust your own advice and ask questions to people, doctors and educated medical professionals before you embark on your next path. Lastly, If a doctor won’t give you his/her cell # don’t trust them and if they don’t call back within less than 24 hours find a new Dr. The Silver Lining because there always is – found a new team of Amazing Doctors in Boston and my Dog Hutch (Trained Service Dog)is temporarily out of retirement and back to work with me.