Heads Up! It’s Time for Deep Brain Surgery!

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The two photos above are not a “before” and “after” set. They are both “befores” (my husband clippered my scalp the other day and I shaved my beard). The “afters” will appear below as I undergo three procedures to surgically install Deep Brain Stimulation (DBS) wires in my noggin and a battery pack in my chest. I’ll be admitted to Mount Sinai Hospital in Manhattan tomorrow (Friday, October 6) for the first operation. The second will be three weeks later (Friday, October 27), and the third the following week (Friday, November 3).

But it’s more than just three surgeries. I have follow-up appointments galore. In fact, the doctors won’t turn the contraption on until Thursday, Nov 16, and I’ll probably have to return multiple times to fine-tune the battery pack’s signal.

When did I start this quest to reduce many of my Parkinson’s symptoms? I first mentioned the possibility in a post I wrote on February 8 (click!), where I said, “I had my quarterly visit with my Movement Disorder Specialist, the doctor who’s treating me for Parkinson’s disease. We (the doctor, my husband, and I) decided I should get Deep Brain Stimulation (DBS), whereby a surgeon will drill two holes in my skull, feed two tiny wires partway into my brain, then thread the wires under my skin to a battery pack inserted just below my collar bone. It sounds crazy, but it’s a safe procedure that has helped thousands of people with Parkinson’s.“

Jump to May 28, when I wrote a post titled “I’ve been approved for Deep Brain Stimulation” (click!). This was followed by a July 21 post, “Where am I with DBS?” (click!), which details the many interviews I had with a psychiatrist, a neurologist, a neuropsychologist, a nurse practitioner and others, who all had to agree that I was a decent candidate for the procedure.

I also visited my Primary Care Physician, who gave me a physical exam to affirm I was healthy enough to undergo heavy sedation procedures.

I’m now set for Round One, which I’ll write about after I am discharged this weekend. I’ll continue to update this post as events develop. While we’re waiting, we can listen to a clip from “The Wizard of Oz,” where the Scarecrow sings “If I Only Had a Brain.”

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1.  Implantation of brain neurostimulator electrode #1 – (Friday, October 6)

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Last Friday, Yong Ih (my husband) and I braved the morning rush hour traffic to drive to Manhattan’s Mount Sinai Hospital on the Upper West Side, where I had surgery to place an electrical lead (rhymes with “seed”) deep in my brain on the left side.  In three weeks, I return to have the same procedure on the right side.  Then, the following week, I return to have the battery pack inserted in my chest, and after that, I return once more to finally crank the gizmo up.  At that point, I can probably start reducing the amount of Parkinson’s drugs I take every day and hopefully experience a tremendous lessening of many Parkinson’s symptoms.

I spent the night in the hospital and came home the following morning.  The first picture above shows me in the recovery room, rocking an off-the-shoulder look with the hospital gown.  The second picture shows me at home, just before Yong Ih cleaned the scar on my skull with a special, medicinal shampoo and put on a fresh bandage.

At the moment, my life continues as it did before the surgery, with a few changes.  For example, I tend to sleep on either my right or my left side.   Since the surgery, I’ve slept only on my right, so the scar on my skull doesn’t push against the pillow.  I prefer this side anyway, since when I go to bed, often my right leg either thrashes about uncontrollably (what’s called “dyskinesia”) or contorts itself into weird and painful positions (“dystonia”).  When I lie on my right side, I drape my left leg over the right one, and that typically calms things down.

DBS is not a total cure for Parkinson’s.  It reduces or banishes many common motor symptoms (bye-bye dyskinesia and dystonia!), and cuts down on “off” periods when your medication doesn’t seem to work at all.  However, it doesn’t fix speech or swallowing issues, bladder urgency, balance problems and a host of other symptoms.

Basically, if the Parkinson’s drug Sinemet (carbidopa-levodopa) ameliorates or temporarily cures the symptom, then so will DBS.

Even though I’ve made great headway (pun intended) with DBS, it will still be more than a month before I can throw away my cane and return to the gym, the swimming pool, and the Parkinson’s ping-pong club.  Ditto walk freely through the woods and in the city.

Does anyone care to go dancing?

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Update, Oct 20

I’ve had three doctor appointments since the first surgery:

• A visit with my primary care physician to verify I’m healthy for my next surgery.
• A trip to the Mount Sinai lab to do an X-ray scan of my head (see below).
• A visit with the assistant to my surgeon, who inspected my scalp and said everything was A.O.K.  She also snipped and removed the stitches.

Here’s what my head looks like at this point:

You can see the hole in the top of my head – it will have a permanent cap on it.  The tip of the wire leading down into the middle of my brain will generate impulses to stimulate certain parts of my brain once everything is complete.  The other wire, which circles around my skull and temporarily ends toward the back, is outside my skull but under my skin.  For the final surgery, it will extend down to my chest to the battery pack.

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2. Implantation of brain neurostimulator electrodes #2 – (Friday, October 27)

I had my 2nd surgery last Friday.  Now you can see two leads (rhymes with “bleeds”) in the middle of my brain:

If you look carefully, you can also see the wires that are outside my skull but under my skin.  At the end of this week, the doctors will extend these wires down the inside of my neck and attach them to two battery packs that will be implanted someplace in my chest.

Here’s the latest view of my head from the outside:

We’re more than halfway there!

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3. Insertion or replacement of brain neurostimulator generator or receiver – (Friday, November 3) 

Here you can see some new scars on the back of my head from the Nov. 3 surgery, when the surgeons connected the leads in my brain to two battery packs, located underneath my shoulder muscles (see below).

Below are the two batteries.

Q:  There seems to be a lot of loose wires in my chest; what’s that about?

A:  They’re not loose wires inside my chest, even though it may look that way. 

During DBS surgery, your heart is monitored closely the entire time. This is done with cardiac monitoring wires, a procedure very similar to when you get an EKG at a doctor’s office, and they put stickers on your chest and attach wires to them. The wires you see in this X-ray are external and stuck on my skin with stickers. 

The doctors made incisions in my armpits to insert the battery packs

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Now we just have to wait two more weeks before the doctors turn everything on.  I can’t wait!

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4. Deep Brain Initial Programming – (Thursday November 16) 

My husband and I drove into Manhattan to Mount Sinai to have them turn on the current in my Deep Brain Stimulation setup.

Thank you to the entire DBS staff at Mount Sinai for making this dream a reality!

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Here’s the clip from “The Wizard of Oz.” The Scarecrow performs perfectly in this number, but notice what Judy Garland does with the line she sings. She starts with a very straightforward, on-the-beat “With the thoughts you’d be thinkin’ you could be another Lincoln…” but then she slows down a bit and sings “…if you only had a brain” with a certain amount of pathos.  Go, Judy!

Of course (spoiler alert!), it soon becomes clear that the Scarecrow really has a brain and is a quick thinker.  For example, in the next scene, where the talking apple trees get angry with Dorothy when she tries to pick one of their apples, it’s the Scarecrow who comes up with ideas on how to get the trees to pick their own apples and throw them at Dorothy and the Scarecrow, allowing them to eat.  Click here for that!

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Note:  The Michael J. Fox Foundation has a short guide to DBS.  Click here to open it.