I meant to get this up sooner, but shockingly having six appointments in two days left me pretty wiped out. Now who would have expected that?
That being said, the whole process was surprisingly pain-free (with the exception of the physical therapy appointment where I was off, but there is not much that can be done to avoid that). Everyone I met with was exceedingly professional while assessing whether I was a good candidate for surgery; it was clear throughout the process why Oregon Health & Science University is recognized by the National Parkinson’s Foundation as a Center of Excellence. In other words it’s exactly what my parents and I needed to set our minds at relative ease.
Obviously DBS is a massive undertaking for any family, but it feels safe to say the dynamic has been complicated further by my age, and my status as an only child. There has been a lot of tension between my mother and I throughout the process as she has felt it may be too soon (not that I haven’t had that thought at times, too), and that I may not be adequately preparing myself. I totally understand where she is coming from, but that hasn’t made it any less frustrating. When PD steals your agency at 23 it can be tough to listen to mom, even when she might be right.
Of particular concern to her has been the fact that OHSU and Dr. Burchiel have been leading the charge with performing the procedure asleep. Now while I see that and say, “sign me the fuck up, doc!” my mom is a bit more cautious. She’s been particularly concerned with the lack of long-term data concerning asleep outcomes.
Anyone who has gone through a major surgery knows that no matter how prepared you are it always comes down to taking a leap of faith. That may be especially true in my situation because I’m such a unique patient, but after meeting with Dr. Burchiel during the second day of the consultation I think we’re all more comfortable taking the leap.
Considering this is my first surgical experience I really had no idea what to expect, and he actually rubbed me the wrong way initially when he walked in and asked what I was there for.
“I’m here for DBS.”
“OK. For what?” he said.
“Parkinson’s”
“You’re a little young for Parkinson’s aren’t you?”
Though it became clear as he spent the next 15 minutes looking at my records that he’d entered the room without being briefed about me, it didn’t do much to keep me from steaming.
When he was done looking at my files he turned his stool towards us to explain how he saw his role in the whole process.
“I’m not a traffic cop here. The ultimate decision about having surgery and what site to target will be made with your neurologist.”
He the set about explaining the details of the asleep procedure at OHSU. Either awake or asleep, they take an MRI a few days before to plan the trajectory of the leads. However, becuase they don’t need to see your symptoms you can still take your meds. Once they put you out they mount the frame to keep your head still, and a few fiducial screws to serve as visual references during surgery.
Once they have you your head opened up they use an intraoperative CT Scan overlaid with the pre-op MRI so they can guide the leads in real-time. Not only does this increase the accuracy of the lead placement, Burchiel said, but by not relying on micro-electrodes to determine correct lead placement they also reduce the risk of intracranial bleeding and surgical infection. The trade-off? No honeymoon period after surgery; unlike Jasmine I won’t be experiencing any relief until the initial programming. Performing the surgery asleep also allows surgeons to complete the procedure quicker, averaging about two hours per patient.
They’ll be placing both leads in one procedure, likely on a Monday. They will take the ends to a spot behind my left ear before sealing me up to complete stage one. After recovering for a few days they’ll open the incision back up so they can thread the neck wires down to the pulse generator they’ll be implanting in the left side of my chest. They’ll turn the generator on at an idle to help your brain warm up to stimulation. They’ll schedule me for my first programming about a month later.
OHSU also targets the globus pallidus pars interna (GPi) at a higher rate than many other hospitals that perform DBS. Stimulating the GPi is more beneficial for controlling symptoms like rigidity, dystonia, bradykinesia and dyskinesia while making medications behave more consistently with minimal impact on overall dosages. The more traditional target for DBS in Parkinson’s patients is the subthalmic nucleus (STN), which can be more beneficial for tremor and helps patients reduce their total medication, which can help dyskinesias and any compulsive behaviors that may manifest at higher dosages. Although currently there is a dearth of data to back this up, there are a lot of anecdotal examples that lead DBS centers to believe the GPi carries a slightly lower risk of severe speech complications than the STN. To me this makes sense, after all, imprecise placement of leads can cause all sorts of problems and the STN is a considerably smaller neurological structure than the GPi. After considering my individual case the GPi would appear to be the best target to treat my symptoms.
Other than meeting with the surgeon, my consultation also included appointments with physical therapy so they could assess a the differences in how my body behaves on medication compared to off medication. They are looking for a good response to l-dopa becuase that is a good indicator of whether you will be a good candidate. As you can see from the videos there is a considerable difference, which means I’ll likely be a very good candidate.
On the first day of my consultation we also met with a speech therapist to assess speaking and swallowing. She didn’t find any problems during the assessment, but suggested I work on eating slower should swallowing problems emerge in the future. She also suggested I begin working on the Lee Silverman Voice Training program to be proactive and maintain my speaking voice for as long as possible.
The final component of my consultation was a neuropshycological evaluation. Here they are looking for potential contraindications like cognitive deficiencies and uncontrolled mood disorders. I wrote in a previous blog that I was most concerned about this appointment as a potential roadblock to DBS, but I’m confident I passed it. That wasn’t to say it was easy. It was actually stressful enough that it exacerbated my physical symptoms, causing me to bang my legs on the doctor’s desk and to curse profusely when my shaky hands made assembling colored cubes in precise patterns nearly impossible.
Seriously though, fuck those stupid cubes.
While I feel much better about the upcoming surgery there was a moment that served to keep my perspective grounded in reality.
As I was waiting for the elevator to head downstairs to my second PT assessment a woman, who was in a wheelchair being pushed by a man I assumed to be her husband, commented on my cane.
“Did you carve your cane yourself?” she said.
“No, it was my grandpa’s and when he passed away I figured it would be a good way to carry him with me, and it really helps when I’m having problems.”
We talked for a minute or so as we waited for the elevator, trying to determine what kind of bird’s head graces the top of my cane. When the elevator arrived I let them get in first, and if I’d been smart I would have let our small-talk naturally fade.
So obviously I opened my mouth to ask, “Did you have a good appointment today?”
I immediately regretted it as the man said, “well, they gave us options, but we’re still waiting on a miracle.” As I replied, “aren’t we all,” the women’s voice cracked, “I hate being this way.”
As the elevator slowed and the doors began to open the other passengers asked for her name so they could keep her in her prayers while I felt like the biggest dick in the world.
DBS may not be a cure, but that doesn’t make it any less of a miracle. I’d do well to remember that.
And to not make small talk in hospitals.