19 days Post DBS lead implant

Day 19 Post op,

I know my wife Ann has given you some details along the way but I wanted to give you the official update after my appointment with the surgeon Thursday. Beginning with the surgery on 9-30-08, the procedure went well as expected and without complication. From a clinical view point it was one of the most fascinating experiences I have ever had. In being awake I remember every second of the procedure and was interacting with the staff the whole time. One thing I was surprised about that after all my research and all my conversations with other DBS patients and doctors no one mentioned the steel ball ear plug portion of the halo/frame procedure. During this portion I asked the surgeon why no one ever mentioned this part he told me it was because most people do not remember it. Well let me be truthful I remember ever second of it and I told him I was going blog about it and let the secret out.

First let me say this is a necessary part of this portion of the procedure and the explanation of why it was so uncomfortable is logical but none the less it was painful for a short time. After your head is shaved and cleaned with a sterile solution the frame I s placed over your head and it was as another friend had described like wearing a football helmet and looking through the face mask, this thought made this part more comfortable for me as it was something I could relate to. At this point the chief resident mentioned steel ear plugs to which I responded "for what it is going to be loud" he stated that they use these steel ball ear plugs as s centering point for the frame placement he further explained that this was an area that could not be anesthetized and it would be uncomfortable. It was then the word uncomfortable took on a whole new meaning. They began to tighten these earplugs from each side essentially like a vice with your head in the middle. They continue to tighten until the frame is stable on your head at which point the surgeon made finer adjustments based on the access point and best position for the working comfort of the surgical team. Each time the frame was adjusted it was VERY uncomfortable but not unbearable. It took about three minutes to get the final position at which point the administered Lidocaine and marcaine at the four entry points where the frame would be screwed to my skull for stability. Lidocaine numbs the area while adding marcaine elongates the effects of the Lidocaine. Other than a little pinch from the shots this portion was not painful. The remainder of the surgery was without pain other than the discomfort of being in the same position for many hours of surgery.

Following surgery other than being very sleepy, the following morning after all the ICU monitoring equipment was removed so I could be transferred to a regular neurology floor I was talking with my wife and I had a severe Gran Mal Seizure (A grand mal seizure — also known as a tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures in general. Grand mal seizure is caused by abnormal electrical activity throughout the brain, so signs and symptoms typically involve the entire body1) which set me back a couple days. Following a boost of Ativan & suctioning I was rushed for a CT scan and then an MRI later that evening to rule out a bleed. After evaluation by the neurology radiology team it was determined that the area of concern was post operative swelling around the tip of the electrode and they fell this is what set off the seizure, The average rate for this type of post op event is 1.6% lucky me this is why I do not do well in Vegas playing the odds. I spent one more day in ICU then was sent to the regular neurology floor for observation during which time I had several episodes of what has been termed Focal seizures. I would become unresponsive to questions from the staff and family for 1-2 minutes associated with facial twitching; this prompted them to start anti-seizure medication which really messed me up. This medication just sucks every ounce of energy you could possibly have, I spent the next 2-3 days sleeping 20-22 hours a day and the simple task of going up the stairs was like climbing Mount Everest.

Most of this past week I was having these focal episodes and was confused about most basic things such day, time, and I kept repeating questions not realizing I had already asked them ( I know this is not much different than most days J . Yesterday I went to the surgeons to have the 23 staples removed from my scalp and to be examined. The Dr. was pleased with my progress in that I had not had a focal episode in several days. I am weaning off the anti seizure meds now and should be off of them by Sunday. This will hopefully get me back into a more normal sleeping pattern. Ann has been given the green light to go back to work as long as I do not do certain activities unless she or someone else is with me just as a precaution.

The second part of the procedure on 10-8 went without incident this was where they implanted the programmer in my right upper chest and connected the wires from the implant to the programmer/generator. I am going back on 10-28 to have my programmer turned on and adjusted to control my symptoms; this will be one of several programming visits over the next 2 months as they downgrade my oral medication and increase the stimulation.

I inquired retuning to work in the next week or so with the Dr. and after he finished laughing he stated due to the post operative complications he could not consider re-evaluating this until the end of November I have been slowly spending some time on the computer but currently after about an hour I have to give up due to severe headaches and difficulty concentration on what I am doing. So over all things are going well but slow at this point and I anticipated not being back to work full time until January.

Our film crew was given unlimited access to my procedure from start to finish and is believed this is one of the more detailed documentations of a DBS procedure to date.

I also want to take this opportunity to thank all of my friends and family for the support over these past weeks as well as the support of Ann of without whom I could not have gone through this without her strength. I told her as I was walking away to surgery that I was going for the easy part and it was her that was facing a difficult day of waiting. it is easy being the patient you just follow the rules and put faith in the skill and care of the surgical team. I know Ann is thankful for all the folks that stopped by the hospital to sit with her for a time it was a comfort to have such great support.

1. http://www.mayoclinic.com/health/grand-mal-seizure/DS00222

Stay Focused,

Ken