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Thursday, August 2, 2012

To Drill or Not to Drill: That is the DBS Question

You know the saying, "I need    (fill in the blank)    about as much as I need another hole in my head"? Well, it looks like I don't need another hole in my head, I need two!

We left at 6 am for the 200+ mile trip to Tucson, Arizona. I skipped my Parkinson's Disease (PD) medications as directed and even though it was an easy drive, I felt much worse than I did on my experimental OFF day. It was all I could do to get out of the car. I was very slow and rigid. The t-shirt I wore was accurate. Hey, it was a serious trip, but I needed to keep my sense of humor.

We arrived early and as my Wonderful Husband signed me in, Dr. Norton was already calling my name. We followed him to an exam room and sat down. He asked me about my symptoms, medications and how long ago my PD started. He spoke softly as he explained the DBS (Deep Brain Stimulation) procedure. DBS consists of electrodes inserted in your brain and a generator (the controller) implanted in your chest with wires running under your skin between them. I watched his hands carefully; they weren't shaking (a good sign in a neurosurgeon).

He has done over 600 of these operations with a very high success rate. In other words, patients had reduced PD symptoms, needed less medication and therefore had less side effects (All the things I was hoping for.) He checked my ability to move against opposing forces and my reflexes. He had me stand, then got behind me and pulled me backwards. I caught myself and maintained balance, another good sign.

He thought I would be an excellent candidate for the surgery and recommended inserting electrodes in both sides of my brain, but using a single generator. Since I am so thin, they may have to place the generator in my abdomen instead of under my collar bone (I guess I don't eat enough chocolate chip cookies.) He didn't think I would develop any speech or balance problems, since I didn't have any now. Maybe all those years as a loud-mouthed tumbling cheerleader are paying off.

I told him about my adhesive allergy and he said they'd figure something outI asked about my hair and he said they just shave off a small section where they insert the electrodes and I could wash the rest of my hair the next day. So, it looks like I won't have to wear a Dolly Parton wig, but I may have to learn how to do a Donald Trump comb-over!

He liked my t-shirt, so I told him about my Parkinson's Humor blog and since I had brought some magnets with the Parkinson's Humor web address on them, I gave him several. I asked if my Wonderful Husband could take a picture of us. He said yes and asked if I would be putting it in my blog. I said, "Yes, I write about everything." (I'm not sure he realizes his picture will be seen world-wide.)
Yuma Bev and Dr. Norton
He took us over to Olga, who does his scheduling. Olga explained the next steps and what kind of time frame we were looking at. I said, "Set it up." It will be several weeks before the pre-tests are done and likely several months before the surgery gets scheduled, so I have time to grow out my bangs for the comb-over. 

Since my appointment was over, I took my PD pills. It was noon. I shuffled out to the car and we headed for home. We stopped for lunch at Panda Express and the saying in my fortune cookie made me burst out laughing. 

The ride home was uncomfortable. I felt much worse than my trial run. It must be from sitting for so many hours. I usually walk around and seldom sit for more than 30 minutes at a time. 

By 9 pm, I was exhausted, so I took my last PD pills of the day and went to bed. It took a few days before I was back to my normal self.

I will keep you posted on the next steps and hope to have the surgery done before the end of this year. I can't imagine what it will feel like to possibly be ON all day without the horrid side effects. I can't see myself being any happier than I am now, but who knows, maybe I'll be able to enter America's Got Talent. Yeah, right. (I can hear the buzzer already)

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  1. Sounds like it went well, and also that you got the most appropriate fortune cookie in history!

    National Parkinson Foundation via Twitter

  2. good luck with everything! thanks for your blog, the info, and loved the cheerleader picture.. you're still leading the cheer section..

    Charlie via Facebook

  3. cheering you on Bev (although i was NEVER a cheerleader!) :) - bev

  4. great article! cheering you on! AND you look like Marcia Brady - cute little cheerleader, you!


  5. My DH is waiting for DBS - he's "on the list". He hasn't had all the MRIs and CTs yet but we're hoping that the process will start fairly soon. I guess we're waiting with you!

    Pat from Canada

  6. Linda Giorgilli RiceAugust 2, 2012 at 7:33 AM

    I think the world of you, Bev, and wish you a successful surgery and many easier days ahead to follow. So much love is sent along with this message. It will be like a new beginning for you. You are beautiful inside and out! That will not change!!!

  7. Bev, you help more people than you can ever know....and I'm one of them. You help me remember to stretch those all important SMILE muscles. Prayers that your DBS comes soon...and you never have those "Bendy Toes Blues" again..(just one of your tunes that often pops into my head)
    You've been a cheerleader for all of us Parkies...and we're now cheering for you (Imagine our awkward Parkie pyramids, tumbling and dance routines)...We may look funny but just know, we are cheering from the heart.

  8. Sounds like it is heading in the right direction. My prayers and thoughts are with you!

  9. Keep us posted. I'll be having this 'deep' conversation with my PD doc in November. Hugs & Prayers Amiga!

  10. I literally just read your blog and you literally took a very serious yucky topic and made me lol. Your blog is what my blog wants to be when it grows up. You mix the humor and the yuck. Laughing is my fav thing in the world. We should do a podcast. It would be hilarious!