Recovery (#6 in DBS Series)
As I mentioned in the surgery post, each surgeon approaches DBS is little differently. Some put each lead in during a separate surgery, some put both leads in during one surgery, some combine part of the surgery with implanting the battery, some do it as a separate surgery. Each surgeon has reasons for doing it the way they do, I am not going to get into that in this blog.
I had 2 separate recovery periods with my surgery process. They differed in that the first recovery included a lead and the battery, where the second just had a lead. Another place surgeons differ in approach is in how the incisions are treated. Some use stitches, some use staples, others use glue for a portion. Some make incisions lengthwise down the skull, others make incisions across the skull, or even make semi-circular incisions. My surgeon makes incisions lengthwise down the skull for the lead placement. He uses stitches to close the incision. He uses glue to close the incision for the battery.
One piece of advice I would give that impacts recovery time is to bring a button shirt with you to change into following surgery. It is MUCH easier to slide your arms into an open shirt than pulling a T-shirt over your head (ask me how I know!)
Regardless of approach, the first step you will take is spending time in the recovery room following your surgery(ies). Like any major surgery, it takes a little while for the anesthesia to wear off. I vaguely recall waking from my first surgery in a panic ... I was absolutely convinced that they were unable to install the battery as planned (I could not see or feel it in my dazed state). I believed something had gone wrong (I had visions of me flailing on the table in the OR, causing the surgery to be terminated). Fortunately, one of the first people I saw was a surgeon who was in my OR. I asked him if I had been a problem in the OR and made them stop. He assured me the entire surgery had gone to plan, but I did wake up a bit when they were closing the battery portion of the surgery and they had to get me back under anesthesia.
It is eerie how you have some dream like memories like I did ... but If I hadn't taken notes, I would not remember that occurring now (a few months later). The other eerie memory I have of the recovery room is that you hear lots of disoriented people coming to from their anesthesia. It is hard not to listen, but I certainly tried to stay focused on my surgery.
The good news is they let Dee Dee come to see me shortly after I got there. The other good news is that they let her stay (after saying she could only stay a few minutes) when they determined it was going to be a long time (ended up being almost 4 hours) before my room would be ready. We talked a lot about my memories of the surgery (hearing my brain sounds, etc.). Dee Dee told me the surgeon had called her and said how wonderfully the lead placement had gone (1 placed that day). We were on top of the world!
(Dee Dee grabbed this picture moments after she saw me in the recovery room)
I felt much more at home once I got moved to the main room where I would spend the night. We were lucky, we were on a neurological floor in our hospital, so they understood the importance of getting PD meds on time. I had taken a dose as soon as I woke in the recovery room since it was my first med of the day at 2:00PM. Be sure to talk with the nursing staff about your med delivery. I cannot imagine having to worry about getting meds on time on top of everything else.
I had taken some pain medication in the recovery room, but plan on needing some more in your room. Following the first surgery, I was almost "manic" as I describe it. I was on such a high following the surgery, I didn't feel much pain. I was so excited on how well everything had gone. It really felt as if I had not just had a major brain surgery. I could feel the battery in my chest. The skin around the edges of the unit was very tender. Other than that, I felt great!
(It was good seeing some friends once we got to my room. You can see my smile from how well things went had not worn off! Note that I missed dinner time, so all they had for me was a sandwich, but it tasted good!)
In contrast, following my second surgery, I experienced a whole different level of pain and took heavy pain meds until 3:00AM, when my pain finally broke! It felt like I could distinguish each of the individual stitches on my head ... so different than the first surgery.
Before going home around lunchtime the following day, I had to go for chest and head X-rays ... just to make sure everything was where it was supposed to be and to serve as documentation in case needing to check where things were initially placed if there was an issue later.
This is where I was able to fully utilize my friend Mike's advice ... "Smile and wave at everybody!". I was in a great mood, why not share with everyone? The transportation folks thought I was a little nuts, but they seemed to enjoy me smiling and waving at all the people in the corridors as we meandered through the hospital! I wish I had pictures.
The ride home was a little tough. We live almost 3 hours away from where I had the surgery done. My chest was sore, I really didn't want a seatbelt touching me. Fortunately, Dee Dee thought ahead and we had brought pillows for the ride home. I placed one on my chest and belted in. I felt a little motion sickness, but it wasn't too bad. My advice is prepare for it to be uncomfortable, you can always not use something you brought to make you feel more comfortable.
The first few days at home were spent basically on the couch. We went through a few sets of pillowcases as iodine, etc. rubbed off my head. Bandages were removed after a couple of days (Dee Dee's niece, who is a nurse, removed them following the first surgery. Showers needed to be taken carefully until it was time for stitches to come out. We returned to the surgeon's office to have the stitches removed. It was more painful than I anticipated, but tolerable. Following the second surgery, it was virtually pain free! Go figure that recovery was worse, but stitches removal was much better in round 2!
(It is always nice to have a nurse in the family ... Dee Dee's niece took care of the scary part of taking off the bandages...)
(A few days post bandage removal ... protecting furniture from iodine and other fluids became a must!)
A couple of things we found helped tremendously. Purchase baby shampoo and a baby hairbrush for washing your head post surgery. It is hard to avoid the stitches, so having somebody available to help is a great idea. Setting up our couch with sheets covering the upholstery made it easier for me to be comfortable without worrying about the iodine staining anything. Iodine is a funny substance, it is impossible to wash off but, it comes off on everything you don't want it touching!
(A soft baby's hairbrush and baby shampoo are your best friends until you can submerge the incisions after stitch removal)
My chest around the battery site remained tender for many weeks. Even post - programming, it is a little sensitive around the edges. I find myself leaning on it from time to time when reaching over something. I noticed a small bruise from leaning over the side of a pinball machine cabinet while working on the machine. I became aware of me leaning on it while I was doing it.
The hardest part of the whole process is staying physically inactive. Because the brain can become inflamed for up to 4 weeks after each lead insertion, I was under recovery instructions to avoid strenuous activity for over 2 months. I decided to follow Dee Dee's recommendation to abide by these rules so as to not potentially undo all the good from the surgery. Unfortunately, I managed to drown my desire for activity in sugar and carbs. I definitely gained more weight than I intended!
Often, following the implant of leads, people can experience a "honeymoon" period where symptoms are reduced without turning on the stimulator. This behavior is caused by the simple insertion of the lead into the target area. In some ways, this mirrors the predecessor surgery to DBS where the area has an ablation applied to it (think scarring the tissue). This is also what is done in a currently not widely available surgery called Focused Ultrasound. While this relatively newer intervention requires no incision, the tissue is not able to be returned to its pre-intervention condition ... in other words, it cannot be reversed if the results are not desirable.
For me, I immediately noticed a reduction in medication needed. I was able to reduce my meds by 25% for a week following my first surgery (lead placed on my more symptomatic side). This was accompanied by almost complete elimination of my foot dystonia in the AM. (this lasted basically the full time from first surgery until my stimulator was turned on a month following my second surgery). While there is no guarantee of a honeymoon period, I viewed it as a good sign that lead placement was on target!
The worst part of recovery was waiting until I could start working out again. I became stiff and sore, likely a little depressed as well. Getting back in shape is far harder than maintaining a fitness level. That said, I wouldnt change a thing. I am positive abuout my post-DBS future!