DBS - The Main event Part 2

Two weeks after the initial probe placement I was scheduled for the generator, a.k.a. stimulator, a.k.a. battery pack installation.  This surgery is out-patient and the whole operation is supposed to last less than an hour.  It sounds quick and easy but you still end up spending most of the day at the hospital.

Arrival: 10:45 am, admin check in - same as previous surgery although I'm on meds and got a better nights sleep.  After a few minutes I am brought back to pre-surgical for gowning and IV installation.  

Pre-Op:  Still just as crazy as last time.  "Hmm, I wonder what that guy is in here for?" Could be anything as I listen to conversations all around me.  Same process as last surgery, nurse visit, then Anesthesiologist, Surgeon, intern, Anesthesiologist's intern then up to surgery.  This time, however, they inject you with, well..., lets just call it happy juice.  
Surgery:  At some point on my way to the operating room, I was out because I have no recollection of even getting there.  I especially do not remember stating to a group of nurses in the hall, "hey look, there's a gaggle of nurses".  A statement only my youngest daughter would find funny as I have been calling groups of anything 'gaggles'. Did you know that a group of:

Bats are a Cloud - as in, "Look at that cloud of Bats!" 

Butterflies are a flutter

Crabs are a cast

Crows are a murder

etc..

I think it's insane that there are all these different names so I call a group of anything a gaggle.  See, I told you only my youngest would find it funny.

Post-Op:  I wake up and my throats sore - ventilator tube used during surgery, ugh.  I have a newly shaved spot on the side of my head where they connected the leads from my probes to the leads from the battery pack.  Oh, and of course I have this bulge over my left collarbone. Its now 3pm, "where did the day go!"  

The battery pack.  I'm told that after a month your mind gets used to having something foreign installed.  I hope so because it is only the first week and the pack is already bugging me. It doesn't hurt but when you move certain ways you know it's there. If I'm going to carry this battery around with me, the very least they could have done is given me a USB port so I could charge my phone. 

I've been wearing a hat to hide the incisions on top of my head as the hair grows back. I'm not embarrassed, its just I don't want to gross people out when they look at me.  Plus, I'd rather not get into a big discussion about what is going on every time I bump into somebody I know.  The problem is the new incision on the side of my head is right where the hat lays.  What a pain, literally and figuratively.  

Unlike the first operation, there was no boost from the insertion of the battery pack.  I heal for a couple weeks then I get my first of many programmings.   After nearly two weeks there are still some tender spots, especially where the leads run under my scalp.  Bruising and swelling around the pack is almost gone.  Stitches on the side of my head are ready to come out.  So lets fire this baby up and see what she can do.

Next:  In deference to the late great Gene Wilder, "Alive, It's live, It's alive!"

DBS - The Main event

OK. all hoops jumped through, I's dotted and T's crossed.  I was good-to-go for surgery.  I had to arrive at the hospital by 5:30am after not taking any medications the night before.  As some of you will remember from my previous posts, I don't sleep well without meds.  As expected I was up all night, so it's off I go to have brain surgery on zero sleep.
This may sound trite after the fact but I was surprised by how NICE everyone was at the hospital.  From the person that checked me in, to all the nurses (I think at last count, I was introduced to about 40 by the time I left). I've been to three different hospitals in the past two years and without a doubt, the people at Strong URMC are the best at what they do.  No comparison.  So best as I can remember here is the blow by blow.
5:40am - checked in with hospital administrator - normal questions, insurance, etc.  Then they explained to my wife how I will be assigned  a number that she could use to track me on monitors in the waiting rooms as I went through various stages.
Pre-surgical - this is where you change into your gown and the first of the 175 vitals are taken from you that day.  Also where you get the attractive bracelet used to keep track of every med they give you going forward.
From here I was brought into an area that can best be described as a symphony in chaos. Pre/Post Op.  People, surgeons, anesthesiologists, interns, nurses, patients, family are moving all over this room.  The good news was my family could be with me up until this point.  Here you meet all the people that will have a hand in your surgery that day.  Finally, the neurosurgeon walks in, looks at me says "Are you ready?"  After a quick thumbs up, it's a tearful goodbye to my wife then up to the operating room.
Operating room.  I guess you could say it was exactly as you would picture it would be for brain surgery.  Equipment everywhere.  And the people!  I lost track but there were nearly 20 people floating in and out of that room.   First up, the part I was dreading the most:  The catheter. I don't know why I stressed over this one tiny piece of the operation more than any other, but I did.  Then I got some good news.  After a numbing agent was applied (yes that was weird) I would be temporarily put out so they could do the catheter and attach the headgear. I guess I was out about 10 minutes and now I was being whisked over to a CAT scan so they could do a final map and overlay it with the MRI.  
The prelims were now over.  I was back in the operating room and here is where the meat of the operation was going to take place.  They moved me onto a narrow but surprisingly comfortable molded chair and my head gear was fastened down.  As many monitors were attached to me as my available open skin space would allow.  A quick shave of the head area and it was time for some Lanicane on my scalp.
"Ouch," I shouted out as the surgeon cut into my head with the scalpel. "you felt that?" was his response  "Yes!" I said emphatically.  After more Lanacane was administered they finally got to work. It was a weird feeling, knowing they were doing something up there but not being able to feel it.  At one point I heard something that sounded like the Doctors were scraping on the metal bars surrounding my head.  I asked the nurse what they were doing and the Surgeon piped up that they were removing some tissue covering my skull.  It was almost surreal.  Here they were, scrapping directly on my skull.  I couldn't directly feel it, but the sensation I had was like it wasn't attached to me.  
Drill time.  They prepared me for the drilling explaining exactly what will happen.  Loud noise followed by a loud click as the clutch engaged and voila, you have a new hole in your head.  The first one took about eight seconds and was exactly as described.  The second one was much quicker but didn't sound right.  The drill must not have done as good a job this time as I could feel the surgeon doing some clean-up with some nippers. No pain mind you, I just could feel it.
Probes.  They inserted the probes and then it was the neurologists time to shine.  Her job was to make sure they got the probes in the correct place.  A lot of it was done with sound which is cool as they listen to your neurons fire as they move your limbs. The last bit was a little strange, though.  They purposely go too far to make sure the probes are where they think they are.  This puts them into the part of the brain that works with the eyes.  The neurologist tells me to look for sparkles or lights and tell her where they are in my field of view. Not sure what this does for them but they seemed pleased with my responses., They temporarily applied voltage to the probes and it was amazing!.  My arm completely relaxed which it hasn't done in five years.  I could make a fist again and there were no tremors.  Now, this is what I had been waiting to see.  I got to keep most of that freedom even after they turned it off because of something to do with the trauma of the surgery creating some sort of temporary improvement. It lasted about three full days and was wonderful!
Closure.  With probe placement now complete, it's time to button me up.  Picture a staple gun attaching a small titanium disc to your head.  That's what it sounded like.  Again, there was no pain just this weird sensation of them attaching something to my me. Shortly after that it as back to where I started in Pre/post op.  I was exhausted and dozed off for a couple hours.  I know my family was anxious to see me but there was nothing that could keep me awake at this point.  I woke up around 3pm and had the family come in along with four ice cream cups!  My reward for making it all the way through.
I found out later that after each step of the process a nurse would call my family and update them on how I was doing.  Again, I would like to compliment the staff at Strong URMC for their wonderful care.
You get one night in the hospital so they can monitor you.  Then after a quick check by the surgeons, you're out the next morning.
Recovery.  Apparently, exposing the brain to the air can cause some of it to be trapped inside your head when they close you up again.  This gives you the feeling of having a sinus infection.  Your head pounds a little when you bend over and you feel a little dizzy...  This took me about 5 days to get over.  After that, the most annoying thing was how much the stitches itched as the wounds healed.  My scalp was a little sore too, where they tucked the wires awaiting attachment to the stimulator in the next Operation.
Speaking of which, on to the next post
Battery Stimulator placement.

DBS - Steps three and four

Steps three and four, to me, are the most interesting of the hurdles you need to clear before gaining admittance to club DBS.  Step three is a full psychological examination and step four is a meeting with the Neurosurgeon.

Step 3
Entering into the room with the Neuropsychologist (No, I didn't know one existed either) she asked, "do you know why you are here?"  I jokingly answered ' to make sure I have no plans to kill myself"  "Well, kind of" was her response.  "Kind of?" I thought "But, I was only joking..."  It sobered me up to how serious these evaluations were.  The group of specialists the University of Rochester had put together was there to make sure I was a good candidate. I initially thought it was purely to make sure their 'successful surgery' numbers better by weeding out candidates that would not show a strong improvement from the surgery.  I was surprised to find out it was much more.  They were genuinely concerned about how the surgery would affect me.  They wanted to make sure I had the best outcome possible.
By participating in Michael J Fox's PPMI study for the last five years I have been privy to many of the psychological tests I was about to be given.  While the tests were familiar I still thought I did worse than the last time I took them.  There were more than just memory tests, though.  Discussions on growing up, my siblings, parents, and relationships all were fair game.  We touched on a lot of subjects.  I must have answered most of the questions to her satisfaction because, in the end, she said she would recommend me for the surgery.  So, I was off to the next and final step.
Step 4
The meeting with the neurosurgeon was about two weeks later.  He was exactly as you would think a brain surgeon would be. Tall, witty, and just a little bit cocky.  He exuded confidence which, personally, I think you would want from a guy about to get an up-close look at your brain.  He patiently answered every question my wife and I had.  We asked about problems he has encountered with previous surgeries, what they do to reduce the possibility of infection and stroke, new emerging techniques and are they worthwhile waiting for, which unit he would be implanting, and an hour-by-hour breakdown of the surgery day.  He even commented that as a patient I was required to bring a joke to the operating room.   Over the next several days I thought about looking one up on Google.  I mean, there must be Neurosurgeon jokes out there somewhere, right?  Then one occurred to me.  "What is the difference between a Neurosurgeon and a Proctologist", I will ask the Doctor after getting wheeled into position. Hopefully, his answer will be "I don't know" at which time I will shout "hold it, stop the operation!"
He approved the surgery to move forward and now the dreaded wait begins for the scheduling person to call. It's obvious (and I guess good) that these people are in no hurry.  If they were in a rush there probably is something majorly wrong with you and they want to get in fast.  As excruciating as it is I will wait patiently to find out my drill date.

This whole process, from initial thoughts of having the surgery in March to the actual day of the surgery in August, has taken five months!  I'm not sure if that is typical but from what I gather reading others comments it's not far off.

Well, as I finish writing this, its T-4 days until the big event.....
"See you on the other side, Ray"