Thursday, August 15, 2013

Risk of Stroke is 1-3% for DBS...Of course I'm in the 1-3%

I'll start off by saying, I am fine.  However, if you asked me or my wife that question about a week ago, you would definitely have gotten a different answer.  Nevertheless, thanks to the great work of some excellent therapists, doctors and nurses as well as some awesome support from my wife, kids, extended family and friends both in town and around the world, I am on the mend and will be back to 100%  in no time.

Let me start at the beginning....

If you've been following my blog, I've been tracking my progress toward getting a DBS device installed in my brain over the past 3-4 months.  I went through the entire screening process and was approved by both the doctors and my insurance company for surgery last week.  My sister-in-law got in town on Tuesday to watch the kids while I was in surgery and in case my wife wanted to sleep over as well in the hospital room.  I had gone through the pre-admission process on the previous Friday and had my blood drawn, vitals taken, chest x-rayed and various parts of me poked and prodded while they explained where and when I needed to be the next Wednesday.

My wife and I got to the hospital on Wednesday morning just before 5:30 am and I was pretty quickly whisked back for the doctor to place a Halo-like device on my head for surgery.  Now, most people are probably do not know what a Halo is, but since my daughter broke her neck last October, we were very familiar with this device.  In fact, we asked the doctor to take a picture of me with the device, so my daughter can see me as her Halo Twin.  However, all I can say about the device is OUCH!  That was truly the one time where I actually felt pain during the entire surgery.  Basically, the doctor used a local anesthetic at four locations and proceeded to screw four screws into my skull until they basically touched my skull.  While the local basically alleviated the pain, the fact is the Halo is basically squeezing your skull so that it stays in place and it hurts from just the pressure.  The pain did ease as I got used to the pressure, but damn it hurt and I have even more respect for my daughter's high level of pain tolerance than I did before I got the Halo.  After they placed the Halo, I was taken to get a CT scan where they screwed me into the machine, and took pictures for a couple minutes.  I was then wheeled in a wheelchair to the operating room and put under for a little while as they prepped me for surgery.

The next thing I remember was waking up as my neurosurgeon talked to me and told me they were ready to begin.  I thought they had already opened me up until, to my surprise and to-be-frank horror, I felt the drill begin to open a hole in my skull.  That's right, I felt them drilling into my skull.  There was no pain, but it was probably the freakiest moment I'd had in my life, up to that point.  I then fell asleep again for a bit, thinking, couldn't they have put me under during the drilling process?  I was soon awakened by my neurosurgeon and a neurologist that was going to place and test the DBS while I was awake.

The process for placing the DBS, is a pain-in-the-ass.  I highly recommend not using your regular neurologist just for the fact that the neurologist becomes your most hated person during the surgery, not because he/she hurts you, but because he/she annoys you to no end.  Basically, the process consists of slowly getting the electrodes into position, my doctors used the globus pallidus interus (GPi), while the neurologist shines a light in your eyes and manipulates your arm and leg to check for rigidity and other stuff (I'm not a neurologist, so I'm not quite sure).  Once they have the electrode in a position they've determined is correct, they turn on the DBS device and up the power settings to see how much room they have for powering the device until your body parts stiffens from the electrical stimulation.  The reason the neurologist is hated is because he has to do this process for all three electrodes and it just gets annoying.  The light shining in your eyes and repeated arm and leg manipulation probably didn't take long, but it felt like a long time while sitting there.

After the placement, they basically had me go to sleep during closing and woke me just before they removed the Halo and took me into the recovery room.  I had a pounding headache from the Halo, but other than that, I was in no pain.  I was very thirsty and the nurse gave me ice chips and got me up to the room as fast as the paper work would allow.  I was pretty out of it on the way up, but my wife noticed right away that my breathing was not right.  In fact she noticed as they rolled me out of the recovery room, up to my room in the hospital.  Every breath or couple of breaths, I would be shuddering after breathing in.  As I began to notice it as well, it felt like when I tried to get a deep breath, the shuddering would start.  I have no better word for it, but my wife brought it up to the nurses and my doctor. In the meantime, I had a small meal and went to the bathroom with my legs on the side of the bed into a bottle.  The remarkable thing is that I had no tremor (this is called a lesion [sp?] effect and goes on for the first week after DBS surgery).  However, as the day wore on, I began to lose the use of my right hand.  By the time the neurosurgeon-on-call came to my room and asked me to smile and point with my right index finger to her finger after touching my nose, my smile was completely lopsided and I could not point correctly.  She immediately ordered a CT scan.  Later that evening, the neurosurgeon on-call came up to discuss finding nothing wrong with the CT and noting my breathing was back to normal, I showed her I still could not grab anything with my right hand.  I couldn't even place it correctly where I wanted it to go.  She said my neurosurgeon would see the CT that night and come up with a plan in the morning.

In the mean time, the hospital staff/pharmacy had totally messed up my med schedule (waking me up every couple of hours to take my Parkinson's Meds) and not listening to me when I told them I knew better than anyone when to take them.  Finally, my neurosurgeon wrote down my med schedule according that I wanted and gave it to them to use for the rest of my stay.  NOTE to any PD patient, write out a specific med schedule that you know works for you and give it to your doctors to give to the nurses when you get admitted for anything and bring your meds in there prescription bottles for the hospital to use.  Most doctors/nurses are not aware of the fact that PD meds are not needed at night and that you might take different dosages at different times of the day. Also, some hospitals do not carry some of the latest meds (Requip ER and Azilect in my case), so bring your meds with you. The best way to prepare them for this is to give your doctor the schedule that you want them to use with the meds you want them to administer.

The next day, my surgeon ordered an MRI, saying he suspected a stroke.  By the time we got the results of the MRI, it was obvious something was wrong.  I could not walk on my right foot or use my right hand.  My surgeon told me there was a 6mm x 10mm stroke right next to the location of one of the electrodes.  He had a positive attitude about my ability to recover because while I had loss all coordination in that side of my body, I had no noticeable signs of any loss of strength, I was young and except for the Parkinson's, I was relatively healthy.  Nevertheless, I was part of the 1-3% of people who suffered a stroke during DBS surgery.  Given my family's history, my wife and I could only take it in stride and say of course I had a stroke.

I'll discuss my rehab in my next post....

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