It's time to get serious! (#5 in DBS series)- (Updated to include pictures during the surgery)
Updated: Mar 19
Note: the original post has been enhanced to include pictures taken during the surgery. Care was taken not to show graphic pictures, but to show what the surgery process looks like, including videos. A separate post includes a few graphic pictures here
Now that it is time for my first surgery, some of the reality of recovery time is starting to set in. I have to admit, it does seem a little like the "Brain Surgery" edition of the famous Operation game will be happening when they get to it!
Unlike most young boys, I never got a "summer cut" when I was a kid. I always seemed to have this haircut until middle school age or so.
So, I was a little uneasy seeing myself with little to no hair at the same time I would see the incisions from my surgery. So, I decided to get my first "summer cut" the week of my surgery.
It wasn't as bad as I thought it might be, I kind of like not having to worry about how much my CPAP machine messes up my hair overnight! But, I doubt this will become my new hairstyle, even though it will be for the next few months.
As I have spoken with multiple people who have gone through the DBS process at many different hospitals, I have determined there are a myriad of processes. Most range between 2 and 3 surgeries, some putting in both leads at the same time, some putting in one at a time. Some combining battery placement with lead placement, many not. Rather than get into a discussion that is above my deep understanding, I am just going to lump my 2 surgeries into one post. Timing of surgeries also varies. My advice is understand why your surgeon does it his/her way, there is likely a good reason. My other advice is your surgeon will likely NOT change process just for you. In other words, the surgery process is one of the variables in your decision process, but not one you can control.
We had a nice dinner across the street from our hotel and felt very relaxed about everything. We are ready!
(delicious salmon for my "Last Supper")
Arriving at the surgery reception at 6AM completely off PD medication was a significant challenge. I love a shower before starting the day. Our hotel (literally across the street from the OR) was kind enough to get us an ADA room, so I had access to a tub and shower with lots of grab handles and room for Dee Dee to help me through my morning dystonia. I felt pretty good. Dee Dee went down to the lobby and got a wheelchair to get us from our room to the surgery reception across the street.
What I didn't expect was nearly face-planting when the front wheel on the wheelchair caught on a crack in the pavement across the street (it was Dee Dee's first time pushing a wheel chair. Process improvements were made before the second surgery). We quickly recovered and made our way to the reception, arriving a few minutes early.
After checking in, we were called by a number to go back to a small room where I changed into the hospital robe I would navigate through my day. Lots of people came in to our little world over the next 30 minutes or so.
A surgeon came in and talked a bit about how the day would go, he was followed by a nurse who installed an IV port. The anesthesiologist was next, who answered a lot of my questions about being in "twilight" vs "full anesthesia". The surgeon began assembling the frame which would be mounted to my skull with 4 screws. Dee Dee took a picture and then it was time to say good bye. The head surgeon, the surgeon and the "placement expert" all worked together to install the frame.
The head surgeon put some novacaine into each area where the screw dipped in antiseptic ointment would be wrenched into my skull. I have to admit, this was more painful than I was prepared for. Several additional shots were applied when it became too much for me. It was explained to me that if it hurt now, it would only hurt more later ... pressure was ok, but pain was not. In the end, the left rear of my skull was somewhere between pressure and pain when we proceeded to the CT scan. (in my surgical process, leads are placed on separate days. As a result, I had to go through the frame installation twice. I was apprehensive for the second installation. It was as painful as the first time, but I knew it was only 10 minutes or so that I just had to get through.)
(the frame ... it is very light)
(Frame on and ready to go! I was still in a good mood despite the frame installation)
(you can see the two frame screw placements on the back of my head leaking through the bandages)
I was rolled into a room with a table at the same level as my traveling bed. I was to transport over to the fixed table for more adventure. Once on this table, I was moved into the area under the circle full of CT cameras. Then burrito lifted three times to be at the right placement. My frame was then attached to the table so no movement could take place. A plastic device was attached to the frame and a level was put on it to level the table from side to side. The CT scan is overlayed onto the MRI that was done prior to surgery. The combination of these two scans allow the exact location of the lead to be known during the surgery. A device is used to place the lead through the hole in the skull (the lead is slightly rigid so it can penetrate the brain tissue). It is also pertinent to point out that brain tissue has no nerve endings, so it cannot "feel" pain nor the placement of the leads.
(The sophisticated leveling device used to ensure I was level to the CT scanner)
(Thumbs up! Ready to go into twilight anesthesia for lead installation)
At this point, I don't remember anything until I am waking up with the test lead in place. I believe I was under the twilight anesthesia until then. Here, you can see them marking the place for the incision.
(marking the incision site. Another device is added to the frame later to place the lead once the incision is made)
The CT scan from that morning is overlaid onto the MRI from pre-surgery to ensure they know exactly where the lead is in my head during placement.
(Here you can see the electrode being "lined up" for insertion based on the CT scan during the surgery process)
I vividly remember waking up to a somewhat fuzzy picture of the head surgeon talking to me about the sound I was hearing, seeing a bunch of vertical lines on a TV screen and then the head surgeon moving my hand and explaining the changes in the vertical lines and the sounds being made.
(I could see this screen from the table as I listened to the lead going into the STN location)
I was hearing what is going on in my brain the STN location. As the lead moved through the "nucleus" as the head surgeon called it, there were tests that I was put through. The sound was something between white noise and the sound of TV in-between channels. Somewhere along this point, my MDS joined the fun. Numbers were called out, orders given to me "count backwards from 20", "try to speak", "look all the way to the left, now right". I recall speaking very slowly and slurred at some point in the process. "now smile". Someone indicates "see the drop on the right side?". It was all very surreal.
(My surgeon manipulating my hand to determine if placement is ideal. You can hear a "whooshing" through the static as my hand moves, changing the electric signals sent from my brain)
(My MDS manipulating my hand to validate lead placement. It is very reassuring that multiple people were involved in validation)
It was decided there was likely a better path. So the test lead was pulled out and reinserted in a new location. I could not tell this was being done. This time, I did not slur my speech, there was no "pulling" of my neck when I spoke, the red bar next to the vertical lines was much more intense and full ... I understood this to be a good sign. Something was said that I was able to tolerate a large amount of current. There was a point where someone noted that my right foot uncurled. Lots of excited glances were shared. (All of this was being seen through my little "window" from the frame). At one point, I think I recall seeing the head surgeon's face right in front of mine "IT'S THE NUCLEUS!".
This is where knowledge is power. A friend who had DBS surgery before me had told me of her anxiety when her initial placement impaired her ability to speak. That prepared me for the potential for it to happen to me. When it did, I was able to view it as really good news because they knew the placement was sub-optimal and I knew the impairment would go away soon. The test lead location is marked on the CT / MRI and replicated with the actual lead that will stay in place.
an editorial comment: One of the surgical variables is whether or not you are fully under anesthesia during lead placement. I am convinced that my lead placement was better as a result of my being under twilight anesthesia vs full anesthesia. There was something quite reassuring to literally see each of the people with my future in their hands smile through their masks and nod approvingly at each other when the second try at lead placement was so good!
(side and front views of my lead placement. The mess of wires on top of my skull are to ensure there is slack in case of something pulling the wires in an accident. The small "discs" at the end of the leads are the 4 transmitters that are part of my system. The large, thick white areas on the wires are where connections are made to the battery. I now better understand why it is called DEEP brain stimulation!)
There really isn't much to say regarding this part of the surgery ... I recall none of it!
However, I did learn more about how the leads are connected during this part ... it is not for the faint of heart! A small incision is made on the side of the head that corresponds to the side where the battery will reside in your chest. This incision is a few inches back from the burr hole where the lead resides and close to where the main connector resides for the wires.
Then a small diameter "tube" is inserted in the incision on the side of your head, that tube then "tunnels" to the incision in your chest where the battery is placed. Then wires are simply "pulled" through the tube and connected on one end to the battery and on the other end to the wires going to your lead. To me, it sounds just like the process an electrician uses to pull wires through the wall in your bedroom! This process is why you are fully under during battery placement. My understanding is that you are under less anesthesia when you are having a battery replaced as there is no tunneling involved ... they are simply replacing the battery and using wires that have already been placed.
( the large incision on the top of my head is where the lead is inserted. The smaller incision above my ear is where the tunneling rod is inserted to pull the wires through to my chest. There are various things written and drawn on your skull. It takes a few days for this and the iodine to wash off)
I also asked how they are sure the connections won't come apart. It turns out they have special torque wrenches to ensure they are connected fully! As an amateur mechanic, this was fascinating to me!
(the battery placement in my chest. You can see the wires coming from my skull down my neck to the battery)
There are many different processes that get you to the same spot (leads placed and battery installed). Your surgery team has their reasons for what process they choose. In my opinion, lead placement is the most important part. Be very comfortable that your surgeon will get the lead placed in the most effective spot.
The more I understand of surgery process, the more I can relate it to the work I do on my car ... there are many parallels. It has demystified it a little for me now that I have actually gone through a surgery!