The final surgery went well. Other than having a hard time keeping anything down, it was fine. The doctor nicked my jugular vein, which gave me the worst bruise I’ve ever had. I had injections scheduled, but couldn’t go because my neck hurt too bad.
Now I have a pulse generator/battery on each side.
This surgery was a lot better. I had the original anesthesiologist team from my 2018 surgery. I asked to be under for as much as possible. Unfortunately, they had to wake up during the drilling of the hole because my breathing was too shallow.
I had to do the same tasks like the previous surgery: open and close my left hand, tap my left foot, open and close my jaw, draw a circle, draw a straight line, etc. I remember the suction to close the hole, such a weird feeling that feels like it goes on for at least 30 seconds. Next thing you know, I was being transferred to my recovery bed. I had a hard time keeping food down for the next few days but the pain was much better.
You can see the new “horns” in front of the incision where the STN electrodes were placed. Behind the staples you can see the original “horns” for the GPI electrodes.
Family is the Best medicine!
The BEST get well card EVER, from my oldest grandson, Louie!
The awake surgery was just as bad as I imagined. I wasn’t very sedated when they drilled into my skull. I was surprised to see they use the same incision from my first surgery. The drill site is actually just in front of my original horn Here you can see the coiled wire, waiting to be connected in the third surgery.
I was able to see the monitors with my brain activity while they had me repeat certain tasks with the right side of my body: open and close my fist, tap my foot, open my jaw, draw a spiral circle, draw a straight line, etc.
They asked me if I wanted to be sedated for the suturing and I said no since we were so close to the end. That was a BIG FAT mistake! All of the anesthesia had worn off before the were done stitching me up and putting in the staples. Then is was a good 30 mins before I got pain meds in recovery. I’ve never had such a bad headache in my life.
If it’s not one thing, it’s another. I had to go to the emergency room because I developed superficial thormbophlebitis. It’s the red part of my arm. They started me on antibiotics.
Dawn helped me shave my hair to donate. I BIG shout out to her salon: 11-21 Salon! I’m glad I have all my fabulous wigs waiting for me.
She let Kurt cut off the first section of hair.
Here I am getting the Leksell frame attached. My belpharospam’s were going nonstop during this process.
Next I’m off for a CT scan before finally making it to the OR.
Yep that’s right, I’ll be getting my second DBS system. After multiple doctors appointments and input from some of the top movement disorder specialists, they decided the next step will be a DBS system implanted in the STN portion of the brain.
My current system is in the GPI portion of the brain. There isn’t a lot of research with this course of treatment on someone with generalized Dystonia.
Since I already have a system, they can’t do my surgery in the MRI machine. That means I will be awake for this go round. They can only do one side at a time, so it’s not too much on my body.
I have a slew of preop appointments, one of which is a MRI scan. I can only have the scan done in a MRI machine that’s approved for a DBS System.
Fun fact, I can only go for half an hour in the machine then there’s a cool down period of half an hour before they can finish the scans.
It’s taken me a longgg time to emotionally and mentally come to terms with the fact I’m on disability. Not only has this thrown a wrench into my retirement planning but also the mental workout I received from problem solving. I can no longer use a keyboard or mouse for work, let alone use a pen.
Sadly I can’t style my hair or apply makeup the way I used to. I can’t clip my own nails and struggle to scrub my hair with shampoo. Shoot, even shaving my legs can be difficult on a bad day. Just holding my phone can cause my hand to seize. I really miss gardening. I’ve been finding hacks wherever I can. I found a floss handle that helps make it possible for me to keep up with this daily chore. I’m learning to apply eyeshadow sticks with my left hand and it takes me a long time. Kurt can actually apply my makeup better than I could with working hands. 😃
I finally feel as though I’m finding my groove. I’m learning to ask for help and except it when it’s offered. I’m learning to slow down and enjoy the little things. I’m so grateful for my friends and family that make me feel loved, not different.
My handwriting was starting to becoming illegible, even to me. My hand/fingers would seize before I could even finish a sentence.
I can no longer write with my right hand. My wrist tremors when I grip a pen and when I try to write my fingers physically lose control of the pen. Video link – can you read that?!?
I continue to lose fine motor skills. Things like buttoning my clothes or clipping my nails are a challenge.
I practice penmanship with my left hand most mornings. I can only go for so long before my hand gets tired. I worry that this repetitive motion will trigger the same neurological issues in my left hand. I try not to overwork it. Kurt fills out the majority of my paperwork for doctors appointments and what not.
My doctor said I would need to practice for one hour a day for six months to write like I did with my right hand. At the rate I’m going, it will probably take six years, heehee!
At work, my hands were starting to seize up when using a mouse. I had a right handed mouse and when that hand hurt too much, I would witch over to my left handed mouse. I will go back-and-forth all day long. I couldn’t type like I used to and ended up pecking at the keys. On Monday, my hands would hurt but I could still move them. By Wednesday, I was super tired and by the end of Friday my hands hurt so much I couldn’t really move them.
Around March 2022 I started having trouble holding a pen and my penmanship was getting sloppy. I would go back through any notes I took that day to make sure I could read them. I was also experiencing writers cramp.
We were increasing the amount of Botox for my hands and wrists. The muscles are harder to isolate for each individual finger, which takes a lot more poking and prodding. My injections were now taking about an hour starting from head all the way to toes.
Subtle changes started happening in the beginning of 2022. My right eye started involuntarily closing again. We thought increasing Botox would take care of it, which it did for a while.
My energy was depleted by the end of the week. Sometimes I would need a whole day in bed over the weekend to recharge my energy level.
Then one night laying in bed, the toes on my right foot curled under. My whole foot was cramping and I was unable to straighten them out. I had to get out of bed and physically pry them straight. I thought perhaps this would be a one time thing. Unfortunately, it started happening every few days until it was a nightly occurrence. It’s as if the weight of the blanket triggers them to curl. We started Botox injections for my feet again.
I couldn’t understand why this was happening because I had made such great progress with my feet since my DBS surgery.
It’s been a long time since I’ve been able to post and thanks to help from my family, I will be able to continue with my story.
My surgery date was coming up fast but Boston Scientific didn’t have their programming ready to connect to my Abbott wires/leads. That meant I wouldn’t have my DBS system turned on when I left the hospital. It made the decision to stay with Abbott a no brainer. I couldn’t risk going back to a pre-DBS life where my mobility was limited.
I had some heart complications after surgery so now I have regular visits to a cardiologist. This has taken up more time than I anticipated.
Me Myself and My Dystonia 