DBS Surgery #2, a personal essay - Cure Parkinson's

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DBS Surgery #2, a personal essay

GaryTorch profile image
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DBS Surgery #2

by Gary Turchin

On Nov 12, 2020, a good eight months into the pandemic, I found myself checking in to Kaiser Hospital, Redwood City, for brain surgery. I arrived at the hospital in terrible pain. I had stopped taking my medications for Parkinson’s disease (PD) four days earlier—doctor’s orders were for 24 hours off the meds, but I wanted to do more. Why? To prove something I guess, but I’m not sure what. But now I was four days in to my med fast and it wasn't going well. The worst symptoms had manifested. Not tremors, I can deal with tremors, they’re annoying but not painful; not dyskinesia, the herky jerky motions we people with Parkinson’s live with, again, annoying but not generally painful. My current symptoms involved dystonia, intense muscle spasms in my right hand, arm, and neck, spasms from which there was no relief, other than medication, which I couldn’t take now without jeopardizing the surgery itself. so as you can tell, I’d painted myself into this painful corner

The surgery plan was simple enough, in a brain surgery sort of way. They were going to drill deeply into the left hemisphere of my brain, to a region called the substantia nigra (STN), where they’d deposit an electrode, connect it to the battery in my right breast that had been installed six years earlier—when I had a deep brain stimulator implanted in my right hemisphere. To give you a scorecard: Left hemisphere of the brain manages the right side of the body, right hemisphere, the left side of the body. Keep this scorecard handy as we work our way through this story.

I find myself in this predicament because of the ineffectiveness of my Parkinson’s medications. Upwards of 20 pills a day and, after 18 years, they were doing me more harm than good. I am also in the predicament because my condition had progressed and I was growing desperate for relief.

DBS, or deep brain stimulation, is kind of a mystery to modern medicine. They aren’t 100% sure how or why it works; they just know it does work. They figure by putting a current in the right spot in your brain it intercepts the messages that cause tremors and other disruptions to the nervous system caused by PD. The surgery in my right brain had gone reasonably well but now the left hemisphere (affecting what side of my body?—correct, the “right” side) needed the same intervention.

“I need pain killers, NOW” I pleaded to everyone I encountered, including the receptionist, who told me, “take it up with your surgeon Mr Turchin,” and Ivan, the physician’s assistant who greeted me as I entered the surgery ward, “How are you doing today Mr. Turchin?

“Terribly. I need pain medication now! PLEEEEEASE”

I wasn't beyond begging “in a few minutes, Mr. Turchin. “We need a pharmacist or physician to sign off on the prescription first” he explained.

Meanwhile, Brenda, the blue-eyed Irish nurse assigned to my case, got me into a hospital gown, and washed my body down with antiseptic.

“Gary, you’ve got lovely skin, ya’ know that don't ya’, hon? So smooth…How do ya’ manage that?”

She’s trying to distract me, I know she was, but I was having none of it…

“There won’t be any more smooth skin if I don't get some pain medication right away,” I muttered.

“Gary needs his pain meds!” Brenda called out across the ward, to nobody in particular.

“WE’RE WAITING FOR A DOCTOR TO SIGN OFF ON THE PRESCRIPTION,” came the response, again from the physician’s assistant.

Finally, more than an hour and a half into surgery prep, a needle-full of blessed painkiller was procured. It didn't put a dent in my pain, however. A second dose was administered. It barely registered.

“NEED SOMETHING STRONGER,” I demanded.

“They can’t give you anything stronger, luv,” Brenda explained, “because they have to be able to talk to ya’ during the surgery, get clear-eyed feedback from ya’, hon.”

I knew that was going to be the case. During the last surgery, I was reciting poetry to make sure that my voice wouldn't be damaged, an occasional side-effect of the surgery and one I was most nervous about.

But damn it, poetry and my voice were the last things on my mind at the moment. I wanted, needed pain relief, NOWWWWWW!

Dr. Sedrak, my surgeon, to the rescue. Sedrak looks a little younger than you want your brain surgeon to look, but his dark eyes were brimming with confidence. He took one look at me, bent neck, glassy eyed, grimaced, writhing, “Gary, you’re in terrible shape, I see that,” he acknowledged. “I don't think we can even get you into the crown, nevertheless operate on you like this.”

They screw your skull onto a metal crown that looks like a medieval torture device, then screw the crown to the operating table so your head is held at the right angle and doesn't move.

“Well doc, if you can’t operate, I’ll be disappointed, but I understand. Can I at least get that painkiller now instead?”

“Well, there is another option,” Dr Sedrak offered. “We can do the surgery under general anesthesia.” In other words, just knock me out and operate, without getting any live feedback from me.

“Doc, can you get the electrode in the exact spot it needs to go?”

That's the whole ballgame with DBS. Even a millimeter off can have dire consequences (like the damaged voice mentioned earlier). It’s so important that a specialized biomedical engineer, in this case a guy named Siddhartha, was in the operating room to make sure the placement was spot on.

“Sure!” Dr. Sedrak assured me. “We’ve done this surgery under general anesthesia before. We’ll get it right, but its up to you.”

“If you can get it right doc, then go for it,” I said. As I said it, I knew the risk I was taking. A decision made in pain that promised relief of that pain is by definition a risky one. This is the same surgeon who came around before the last surgery saying we were going to operate on the left hemisphere when the plan was to operate on the right hemisphere (thereby affecting the ???? side of the body—that’s right, the “left”). The error was caught in time, but still…

Before I could rethink my decision, my pain and I were wheeled into the operating room. Dr. Sedrak was explaining to his team the change of plans. An anesthesiologist was at the head of my table holding a mask above my face and telling me to breathe deeply, breathe deeply. breathe d…

I have zero recollection of what happened to me the next six hours. They were six hours spent in suspended animation; six hours that disappeared into the fabric of spacetime; six hours just plain missing from my memory bank. Well not completely missing: I had a few wounds in my skull that stiches had closed. That's a remnant of my lost six hours, a residual, a residue. Oh, and I had no pain, no dystonia. My scalp was sore, but I didn't even have a headache!

I woke up as suddenly as I had gone out. I was being wheeled into a recovery room, Siddhartha was standing near me, a Buddha-like smile on his face. “Everyt’ing went well, Mr. Turchin,” he said.

“You got it in a good spot?” I asked him.

“Oh yes, we found the sweet spot, for sure,” he assured.

After some time in the recovery room, I was wheeled into a hospital room to spend the night. I called the relatives to let them know I was OK. Because of Covid restrictions, they weren’t allowed to visit. The nurse brought in a dose of Parkinson’s meds, I didn't feel like I needed them now, I could already feel I was in a honeymoon period where the surgery itself masked the symptoms, without the new DBS being turned on. But when you’re in the hospital and the doctor orders you to take medication, you don't argue, you take. So I took it, and again in the morning. And those turned out to be the last doses of medication I’ve taken to this day. Two weeks later, they turned the stimulator on. It locked the dystonia out, knocked out the tremors and dyskinesia on my right side, and restored to some degree my balance, which I had been losing regularly. I no longer suffered from sleep deprivation nor fatigue, two other side effects of the medication.

I made it to the other end of the pandemic medicine-free. Yes my movements are less fluid than they would be on the meds. but that's a small price to pay for medication liberation and all its benefits.

It’s been two years since the pandemic began and time, like a patient under general anesthesia, has been locked away in suspended animation; two years to wake up and see the same but different world; two years for some Siddhartha or other to tell me ‘You’re okay. We put it in the sweet spot.’ Two long years of being packed away on ice, separated by masks and vaccines and paranoia. Now as we peel the masks away, will we ever return to the way it was? Equipped with the new stimulator, and medication free, I know I won’t.

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GaryTorch profile image
GaryTorch
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23 Replies
Bolt_Upright profile image
Bolt_Upright

Bravo! What a great story, and told so well. Thank you for sharing. Good luck and may God bless you.

GaryTorch profile image
GaryTorch in reply to Bolt_Upright

Thank you, Bolt!

Buckholt profile image
Buckholt

Very nicely written and great to hear about a positive outcome. Good for you.

Zella23 profile image
Zella23

You certainly have a gift for writing, I was right there with you on your DBS journey. So pleased it went well for you and you can get on with living without meds and side effects. Thanks for posting this and all the best for the future.

GaryTorch profile image
GaryTorch in reply to Zella23

thank you !!!

jeeves19 profile image
jeeves19

lovely post Gary.

Missy0202 profile image
Missy0202

so relieved for you! It gives us all hope. Thanks for taking the time to post such a wonderful story!

Crescendo profile image
Crescendo

I am so happy you wrote this story, and that more people will read about the benefits of DBS surgery. My husband is also off of all Levodopa since his DBS surgery in 2019. The medicine gave him severe dystonia in his legs.

GaryTorch profile image
GaryTorch in reply to Crescendo

great to hear he is off the meds !

beaglefan1 profile image
beaglefan1

Thank you for sharing your story! It was suspenseful. Your positive results will be on my mind tomorrow when I have my day long evaluation prior to DBS surgery.

GaryTorch profile image
GaryTorch in reply to beaglefan1

good luck with the surgery!

beaglefan1 profile image
beaglefan1 in reply to GaryTorch

Thank you. Everyone I've spoken to who has had the surgery has described it as a life-changing (in a good way)

Godiv profile image
Godiv

I never thought I would kind of enjoy reading about such serious surgery. I’m so glad it worked out. I’m sorry for the pain though. Sounds awful and I’m glad it’s in the rearview mirror.

And it’s always the icing on the cake to get a super kind nurse. With what to some of us is a cool accent. :-)

GaryTorch profile image
GaryTorch in reply to Godiv

agree about the nurse and accent!!

Godiv profile image
Godiv

Yep!😀

kaypeeoh profile image
kaypeeoh

Stumbling into the internet I found a website for doctors talking to other doctors. And letting their guard down. One doc said DBS stopped patient's tremors but side effects were much, much worse. He said, "...the freezing makes them not even human anymore."

GaryTorch profile image
GaryTorch in reply to kaypeeoh

not my experience at least not yet. My biggest complaint re DBS is loss of short term memory

Thanks for sharing this experience. So glad it went so well for you. Do you mind sharing where you’re from and how long you had to wait once it was determined that you needed DBS?

GaryTorch profile image
GaryTorch in reply to

i live in berkeley calif. I only h

GaryTorch profile image
GaryTorch in reply to GaryTorch

I only had to wait a couple of months once approved

in reply to GaryTorch

that’s good to hear. Hope the process leading up to decision was short as well.

eschneid profile image
eschneid

Gary,

Xlnt upbeat story- thrilled things went well both times. I am just about at the point 15+ years in where I'm making an appt to speak with my likely surgeon about the surgery.

You mentioned about not moving as fluidly after-- w/out meds. Can you describe that a little more as playing basketball is my main exercise and wondering how lack of fluidity would affect my play. Thanks, Gary.

Best,

Eric

GaryTorch profile image
GaryTorch in reply to eschneid

Eric, Hard to describe. If you play BB before surgery, you should be able to play it after. my movements are a little herky jerkey, but I move fine, with as much fluidity a fiends without DBS. GOOD LUCK!!!

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