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Tuesday, October 23, 2012

Parkinson's DBS Surgery Day

Warning: This story will contain graphic descriptions and pictures from my Parkinson's DBS surgery, but it will also be humorous, so if you are likely to faint or pass out, read it while lying in bed! You have been warned.

Modeling gown
My day began at 4 am; I did not sleep well, but not due to nervousness, it was because the air conditioner in my hotel room wasn't working properly. I washed my hair as instructed, woke up my Wonderful Husband and drove to the hospital, a few blocks away. I got admitted, tagged with an arm band, directed to a pre-op room and given a designer Bair Paws surgical gown to wear. It was now 5:45 am.

Various nurses came in and out; checking vital signs, asking questions, etc. I was handed a urine sample cup and told they needed to do a pregnancy test. I said, "You've got to be kidding!" They weren't. I had been off all Parkinson's medications for twelve plus hours and had nothing to eat or drink, but I managed to get a few drops in the cup (shaky hands). 

Good news! I am not pregnant! Whoo hoo! Yippee! Hooray! 

I wandered around the room, peaked out the window and watched the sunrise, pushed all the buttons and flipped all the switches on the walls, just to see what they did. Soon they wheeled in the "frame"; most of it was in a box but I took a picture of what wasn't. 

Stereotactic frame

Then Dr. Robin Kloth, the anesthesiologist came in. She was tall, thin and had brightly colored shoes on. I told her she needed to meet my Yuma Camera Club buddy Charles. He always wears colorful sneakers. She said, "Surgical scrubs are green, and I wear them every day, so I can only add color to my feet." She explained about the procedure and we discussed my adhesive allergy. I told her I wanted to be as wide awake as possible. Dr.Robin Kloth got me on the gurney and started an Intravenous line (IV).

Some of Charles' sneakers

Dr Norton and YumaBev
Then Dr. Norton and Stephanie came in. Stephanie is a neuro-stimulator programmer who assists Dr. Norton with the surgery. It was "put the frame on" time, so my Wonderful Husband (he hates medical stuff) was sent down to a waiting area. They numbed me up a bit and attached the frame. The worst part was the alignment pins they had to put in each ear while they tightened the frame in place. I thought my left ear was going to fall off, but it didn't. During this part, I asked Dr. Norton "Has anyone ever freaked out at this point?" His reply was, "Yes, one patient, who happened to be a doctor, went berserk, so we had to terminate him." Then realizing how that sounded, he quickly added, "Terminate the procedure, not the patient!" I think we all burst out laughing at that point. As you can see in the pictures, I am still smiling. It was now 8 am. 

YumaBev Still smiling
Then it was off for a CT scan, which took about 20 minutes.  They wheeled me past my Wonderful Husband for one last hand squeeze and I love you. I remember saying, "I'd give you a kiss, but this frame's in the way." My Hubby looked scared, but I wasn't. We were having too much fun.

Next stop was the Operating Room. In there, I met Bill and Adam from Medtronic, the company that makes the device. They made a special trip just to meet the funny lady who laughs at Parkinson's. Introductions were made, some jokes were told and it was time to start. It was now 9:15 am.

Because I am nosy, I asked for everything to be explained as it was going on and complained that they should have set up mirrors for me so I could watch. I said that I wished I could take pictures, so Stephanie asked Dr. Norton if she could take some for me, and he said yes. I think, at this point, they all realized I am completely crazy. 
YumaBev giving the two thumbs up sign
They did my left side first; they soaked the area with antiseptic solution and shaved off part of my hair. I didn't feel the drilling, just some buzzing, Dr. Robin Kloth (anesthesiologist) probably gave me extra juice. Then they placed the lead in my brain and it was time for testing. Your brain makes electrical noise and as they tested, it sounded like eggs frying. All I kept thinking about was those old anti-drug commercials: Here is your brain and the here is your brain on drugs.

The electro activity sounded just like eggs frying

They had me do open/close hands tests and thumb/finger touches; they checked my limbs for rigidity and they had me repeat back "It's a sunny day in Yuma Arizona." Then I could feel him suturing me closed, the sutures were squeaking and he kept saying "her scalp is so thin." I think he had some one pinch the area together because I felt my left eyebrow raise (free face lift). None of this was painful; I could just feel the sensation, like at the dentist.
YumaBev laughing and smiling during surgery

Then it was time for the right side. Someone asked me if I was scared and I truthfully answered, "I am more nervous in the dentist chair getting my teeth cleaned." This time I could feel them drilling and my teeth rattled. I joked that either that side of my head was hard or they needed a new drill bit. Then it was testing time again, only this time, they added a tongue twister for me to repeat back: Round and round the rugged rock the rascally rabbit ran. I think I repeated it back perfectly. 

The actual drill bit from my surgery

Before the procedure, I told Dr. Norton that I did not want to hear the following things during surgery: oops, oh crap, what is THAT, code blue or call my attorney. During the right side, something went clang, clang and clang. I said, "That didn't sound good." Dr. Norton calmly replied, "Bev says she doesn't want to hear oops or oh crap during surgery, so will someone please pick up the large forceps that fell." Again, everyone laughed. I am sure he had four or five more sterile ones on the tray, so I knew he wouldn't use it on me again.

Near the end of the procedure I smelled a really strong chemical smell. I was afraid it was another olfactory hallucination and told them about it. They laughed and said, "No, we all smell it, too. We are cleaning up for the next surgery."

We were done and all they had to do was take the frame off. All went well until they got to the back left side, where it attaches to the table, I think. The bolt or screw was caught in my hair and they had an awful time getting it loose. Getting this screw untangled from my hair was the most painful part of the whole procedure. Dr. Norton posed for one last picture and then went to find my Wonderful Husband and tell him all went fine. It was 11:03 am and we were done.

Dr Norton and YumaBev, all done and both smiling

The new holes in my head are 14 mm wide, about the size of a dime. There are caps in the holes, and the leads are attached to these caps. The leads will be connected to the stimulator in another surgery which will be done next week. The caps are held in place by two tiny screws. So, the next time someone says to me, "Have you got a screw loose?" I can answer, "Gee, I hope not. I'd hate to have it rattling around in there!"

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  1. Thank you Bev for this post. My neuro and I have discussed having this procedure done. I'm just waiting for the interview process. I'm so happy your procedure went smoothly!


  2. Fabulous! DH is waiting for DBS and this is going to be so helpful to him. Thanks for laughing!


  4. Bev, You are amazing! Thank you for sharing this with all of us!
    Love and hugs,
    Tonya V.

  5. Your surgery took less than 2 hours? Mine took 11! And the surgical team kept leaving me alone with Vivian, the South African anesthesiologist with the bright purple surgical hat. At one point I asked her where they kept going. I thought they were taking coffee breaks, and I asked if they could pour some into my IV. But they were going to examine my MRI scans to plot a course through my brain.

  6. Bev, You're the top! You're the Louvre Museum. You're the Top! You're The Coliseum. You're the Melody to a Symphony by Strauss! Cole Porter is inadequate.

    I haven't laughed so much, since, well, last night, When Mr. Obama made fun of Mr. Romney with "we have boats that go underwater." You are so brave and so wonderful. I love you and you're Wonderful Husband! JC adores you as well. We are so lucky to have you in our lives. I don't conside myself so much as dis-eased. It is what it is. You've taught me much, my dear. Take care. Keep having fun.

  7. WOW! Bev you continue to amaze and inspire me! Thank you so much for sharing such a personal part of your journey especially the pictures! It may sound crazy but you've made me fear the future a little less now xx

  8. Bev, you look fantastic! So glad the procedure went well, without any oops or call my attorneys. We are all thinking of you at NPF!!


  9. You are an inspiration!

  10. Thank you for sharing and you look great!

  11. Thank you! How did you and your dr determine it was time for DBS? How are the wires attached to the "module"?
    If you dont mind?
    Ive had parky since 2007 and meds are wearing off sooner and sooner..

  12. i have parki 12 years and the meds:25-250 levodopa are wearing off sooner. doc not a candidate for dbs. read your book kindle and will buy several copies to send friends. i am delighted with the humor you;ve incorporated in book. i would love to meet you and pray that the fda approves the extended release in a few months, which will allow me opportunity to fly from DTW.