Author: kris s

My battery has run its life and it’s time for a replacement. I’ve gotten three years out of it.

Abbott does not currently have a rechargeable battery yet. They hope to have a FDA approved version next year.

Since I’m replacing the battery, Dr Kumar suggested we change the IPG system to Boston Scientific. We’ve haven’t seen the progress we hoped to achieve after three years with Abbott. It’s compatible with the wires already in my brain. Boston Scientific uses the same four node in the wires, except it has the technology for some addition programming.

One question is – do they only make a rechargeable battery? Yes, apparently the battery is made to last 15 years if it’s charged right. I would probably need to charge twice a week for about an hour each time.

What if this system doesn’t work for me? Would I have to wait 15 years to replace the system when we replace the battery? What if I couldn’t wait that long? I would have to beg insurance for surgery to swap out my system to Abbott. I doubt they would approve it and I would be left holding the bill. I can only imagine how expensive it would be.

I have to make this decision in next few days so they will have everything we need for surgery, which will need to be scheduled before the end of the year.

My right eyebrow has been arching up, causing muscle fatigue and cramping. I thought it was my body’s way of trying to keep my eye open because of my blepharospasm. Wrong! I developed some facial dystonia. I look quizzical or maybe a little surprised all the time. Dr Kumar said I looked like Spock from Star Trek, haha!

I kinda thought the days of developing another form of dystonia were over because I have DBS now. Dr Kumar is consulting a colleague of his to explore additional programming of the two top nodes. My legs and feet are doing much better but my neck, hands and eyes still require Botox. The goal is to reduce the need for so much Botox with fine tuning my programming.

I no longer need injections in my feet or legs, which is big success in my book. I’m still getting injections for my hands, wrist, eyes and neck. At this moment my injections are at peak effect. Ultimately the goal is to have no injections whenever we find the perfect program setting.

In this video you can see my middle finger does not have enough Botox so it sticks up too much. The pain goes up my hand when I try to use it for things like typing. I struggle to hold a pen when I write more than a few words but the good news is that I no longer need a writing aid to hold my pen.

https://mydystonialife.com/wp-content/uploads/2021/03/right-hand-5.mov

In this video you can see that my middle finger got too much Botox causing it to droop. This makes things just as hard as if it didn’t get an injection because it becomes rather useless at certain tasks. My pointer finger has pain from trying to compensate.

https://mydystonialife.com/wp-content/uploads/2021/03/left-hand-2.mov

My eyes are a 10 out of 10 as my daughter would say. My neck is in pretty good shape too. At the end of the video is my neck at a resting state and I’m not making it stay straight. I don’t have much pain at all when using it and call this a success too.

https://mydystonialife.com/wp-content/uploads/2021/03/eyes-1.mov

I don’t want to bore you with each session that had the same outcome, so I’ll sum them up.

I would go through all the neurological tests for my eyes, neck, hands and feet. We would try new program settings on various nodes and I would continue to ramp it up a little at a time every few days from home. When I got to the point of too much pressure in my head, I would turn it down and wait to see if I made progress.

Before leaving the appointment, I would get a round of injections from head to toe. I can’t say enough for Botox. I wouldn’t be as independent without it to this day. I am always exhausted by the time I leave.

I was starting to think Dystonia had gotten the better of me and DBS wasn’t effective for me. Dr Kumar never gave up. He would have regular calls with Dr Ojemann, my neurosurgeon, to brainstorm on my treatment.

I did make some progress but it was inching along. Fast forward about a year and a half before I saw significant changes.

We started programming again a couple of weeks after my third surgery. It started out like the last time by gradually bumping up the settings on the first contact. Each time it was turned up, nothing happened. Again and again, nothing happened.

Hmm, maybe that contact wasn’t in the sweet spot. We moved on the second contact and once again turn up the juice all the way up. It’s a good thing there are four contacts because some of them would be in the right spot. This time I experienced a metallic taste.

They sent me home to see if I gained any benefit. I gradually slowed down and felt extremely heavy. By that evening a pressure started building in my head. It was like a horrible sinus infection. The pressure kept building until I couldn’t think straight. I was nauseous and any movement made it worse.

I finally turned it off.                                                                                                                            

Little did I know I would end up with a bald spot. There’s a section in front of the big incision that didn’t grow back and the hair that did grow back is extremely wiry. Of course it’s right in front on display.

Oh well, I can just wear a wig. It saves so much time in morning and I never have to worry about a bad hair day! All you ladies out there should try a wig at least once. Our office has casual Fridays, so what a perfect time to shake up my look. I call it “Friday Funday”.

I want to give a BIG SHOUT OUT to Brooke! I truly believe I look my best with or without hair thanks to my mircobladed eyebrows by Brooke. You can find Brooke at Skincare5280 and Instagram @adorn5280. Thanks Brooke!!

Here are some of my Friday Funday looks. A special thank you to my coworkers Jen and Pat Sue for taking the pics.

Long before surgery I had made the decision to wear a wig while my hair grew back. Finding one I like was much harder than I imagined. I don’t have voluminous hair and it seemed I could only find wigs that were too puffy. I visited any wig store I could find. I ordered and retuned more than I can remember.

The human hair wigs I found were out of my price range. So, I stayed in the human/synthetic blend wigs.

Then one magical day, or so it seemed, I found “the one”! It was my hair color, length and best of all, it wasn’t piled too high with hair. The moment I looked in the mirror, I just saw me. The me that I wanted to see after surgery. Face it, going in public I would look like I had brain surgery. Then came the price tag, ouch! It was as least 1/3 less than any other human hair wig I had found. The store owner makes her own wigs and cuts out the middleman. Still, I couldn’t justify paying so much money on a wig.

I kept on looking at other wigs but nothing compared to “the one”. The whole purpose of finding a wig was to look like myself. In the end, I went back and bought “the one”. I love my wig!

They told me some good news when I arrived for surgery, I would be asleep while they replaced some hardware. I dodged a bullet! I was not looking forward to an awake surgery.

Since I was experiencing so much pain in my scalp at the connectors, they were going to drill a cradle in my skull for my connectors. The hope was to elevate the pain from stretching my scalp since there were two connectors on one side. What a fabulous opportunity to have a do over, right?? WRONG! Now my bone hurts from below and my scalp hurts from the top. Regrets…

Almost two years later and I still struggle with the pain.

The big day had finally come to start programming!

They turned on the device and started bumping up the juice one milliamp at a time. They would stop whenever I felt “something”. It could be a metallic taste in mouth or a tingle in a limb; it’s reaction different for each person.

Every eye in the room was on me waiting for the reaction. No pressure, right. Well, I started to feel “something” alright. There was a searing sensation under my scalp and it increased with every milliamp. This was an unusual reaction that pumped the brakes on going any further. The burning was right at the connectors.

That’s right, the unthinkable happened!

Since I didn’t feel the burn at a lower setting, they turned it down and sent me home to acclimate and hopefully make some progress. People with dystonia gain benefit over time, it’s not something that gets better instantly.

 I was scheduled for an exploratory surgery. They wanted me awake when they checked the connectors and tried more programming to see if they fixed it before they stapled me back up.

I started feeling a terrible burning at the battery too. It just got worse and after three days I had to turn the system off.

Programming of the IPG would start about 30 days after surgery. By this time, all the Botox had worn off. I was surprised just how much dystonia had taken over me. As it progressed over the years, Botox and medication counteracted it.

These videos show the ugly reality and the full effect prior to programming. I am still taking my meds but it has been well over three months since I’ve had Botox injections and the total effect worn off.