Again. I had another DBS.
This time on the right side to control the left side.
We arrived in Phoenix on the 11th of December. The next morning I arrived at the imaging station where I thought I was having ONE MRI, only to realize I was having 826. Okay, it wasn’t that many but it seemed like it. How they can do MRI’s when you already have wires floating through your brain is beyond me. I kept thinking that at any moment I’d feel this slight pull from inside my head and then swoosh… the first set of wiring would be pulled through any willing orifice in my head. Didn’t happen.
That afternoon we (when I say ‘we’, I am referring to my husband and I because no – I do not have a mouse in my pocket) met with my very capable and highly revered surgeon at the Barrow Neurology Center in Phoenix, Dr. Francisco Ponce.
You may remember Dr. Ponce, as he was the doctor who so excellently drilled through my brain the first time to see if any gray matter existed.
Some things never change. Some things do.
For example, remember I told you the first time the procedure was well over seven hours? Remember how I told you that I was woken up several times during the process? Well, that all changed. My neurologist, Dr. Santiago of the Muhammad Ali Parkinson’s Research Center, told me they are trying a new technique that seems to be working great and puts the patient’s body under less stress as they are out of surgery so much sooner. Instead of spending hours testing sites within areas of the brain for wire placement, using the MRI images from the first surgery and those taken the day prior, they are able to place the lead(s) much quicker, finding that in 98% of DBS procedures the first area to be considered for placement is almost always the best, eliminating the need to spend another 5 hours bobbing in your brain for a better fishing hole.
Another thing that changed, as I alluded to above, is they didn’t wake me at all during the procedure. They didn’t need to. They were confident they had placed it in the best spot.
They did have a halo/brace for me but the screw holes in the forehead were nothing compared to the first time. The incision seemed larger but maybe my brain has grown and that is why. I highly doubt it.
The haircut… this seems to be a major interest amongst DBS candidates. They snipped just the areas where there was an incision. Ten in all. There is the one main incision on the right side which took twelve staples, unlike the stitches they used last time. The other incisions are either a pencil eraser size or smaller. One was maybe a half an inch long.
And so, around 11ish or so, I think I was wheeled into recovery. I remember laying there, listening to this one guy that worked there and being impressed at his attitude of doing the most mundane tasks and with such a wiling spirit. It was refreshing.
He wheeled me to my room, which I didn’t have to wait ten hours for one this time around. I felt more out of it this time, maybe because I was under more anesthesia? I’m not certain. But, it makes sense to me, as I was not coming in and out of sleep through the surgery. I was probably put under into a deeper sleep, which made it harder to get past that groggy stage (which I don’t think really happened until 2-3 days later).
It didn’t take that long to come out of it after the first go-around, but then I don’t remember being in as much pain the first time, although the pain on this second session was not much to complain about. Breaking your ribs is definitely a 10 on the pain scale factor. Being in labor a 7 or 8. DBS pain? A 4 or 5. This is for me. Everyone’s different and I also have a fairly high level of tolerance for pain.
Anyhow, I made use of my pain killer this time. Only half at a time, though.
The next morning Dr. Ponce visited me and I was released to go home. I asked him about the increased pain this time. I told him my neck was especially sore. “Well, it’s going to be,” he said. “We have to cram this rod down your neck to guide the wire through.” He was acting out the motion of cramming a rod down my neck.
Not only do I wish I had never asked, being a very visual person, I shudder every time I think about/see that now. No wonder my neck was bruised and complaining.
Do I still recommend DBS? If you qualify, trust your doctor’s recommendation completely, have a great support team, and believe this is what is best for now, then yes, I recommend you put one foot in front of the other and go forward.
DBS isn’t for everyone.
I read today where a woman underwent the procedure a year or so ago and hasn’t noticed much difference. I believe this is rare. And differences noticed vary from patient to patient. I think some people wake up (wanting) expecting to be cured and you aren’t. When I finally came around and out of my groggy stage, I felt way off physically, PD-wise. Talking, writing, walking, living was harder. I wasn’t moving well. It’s better now and I go back within the next week or so to have the stimulator re-programmed.
So, that’s where I’m at currently. I hope this account of DBS II has been helpful.
Journeying with you,