Author: kris s

I had a harder time recovering from the second surgery. Maybe the fog was lifting from my brain or maybe this time it affected my everyday movements…maybe it was all the above. I had so many IV catheters that my hands and arms were colorful and sore.

It was extremely difficult to get comfortable. I always slept on my left side because the occipital neuralgia is on my right side. The occipital nerve burns if a lay on my back or right side. My skull and scalp had a constant pain because of the connectors but the instant my head made contact with my pillow, burn baby burn! I struggled to sleep even with heavy duty pain meds.

A bruise marks the path made to thread the wires from the IPG to the connectors. You can also see some scabs from where the halo was bolted.

10 days later I went under the knife again to get my IPG setup. They hallowed out a pocket in my left chest over the ribs where the IPG now sits. They hooked up two wires (left and right) and threaded it up my neck and under my scalp. An incision was made in my scalp so the wires could be connected to the wires coiled up from the last surgery.

I was delighted because this surgery wasn’t as invasive and I would go home the same day. They gave us the same wound care instructions not to let a scab form because it is a sign of infection that could travel along the IPG wires into the brain. I was surprised how heavy the IPG was, making it rather hard to breathe. It sure seemed big but I chalked it up to swelling.

I was absolutely horrified when I removed the bandage and saw exactly how BIG this monstrosity was! I cannot begin to tell you the range of emotions that I felt. I was mentally prepared to shave my hair but I was not ready for this. I had a game plan for my hair with wigs (more on that later). My hair was a temporary but this is forever. I lost some of my feminine identity that day…

The plan was one night in ICU and then they would send me home. Day two in ICU and I still couldn’t eat because I felt so sick. Sadly, they wouldn’t let me leave until I could eat. Come to find out, they wrapped my head bandage so tight, it was making me ill. Later that day I was able to eat and walk a little bit with the help of a walker. I was released the next day with a walker to use at home.

My neurosurgeon’s nurse practitioner discharged me with instructions to head to the ER if there was any swelling or fever. This is a sign of infection and the implants would need to be removed ASAP to avoid an infection in the brain. A round of intravenous antibiotics would have to be administered. Six weeks later, the surgery could be redone.

Later that evening at home, swelling started at the incision and within a few hours it started moving down my forehead. We started to worry and off to the emergency room we went.

I soon found out that doctors who are new to dystonia find me interesting. Of course, they want to know my symptoms that led to DBS surgery, what meds do I take, how the injections are helping, etc. I would answer their questions and quickly get us back on topic – do I have an infection?

They ordered a CT scan with contrast. I again asked – will that identify an infection? We asked for someone from neurology that was on call.

Word must have spread about me and before you know it, I had four or five different doctors swing by and ask me almost the same questions. Every single one of them tried giving me the simple neurological exam – blink, make a fist and open it…I finally quit obliging. THIS HAS NOTHING TO DO WITH AN INFECTION

They sent in a nurse in training to give me an IV catheter. Well, she botched it and I started bleeding.

Almost two hours later but luckily before the CT scan, someone from neurology stopped by. After a quick look, she was able to tell us that there was no infection. She explained it was drainage from surgery and to expect it to get worse before it gets better. She actually told us what to expect. Kurt was so mad that he offloaded about the poor communication of the nurse practitioner. I’m glad to report it was addressed with her.

I was beyond tired and ready to crawl into bed. I was relieved when we pulled into the garage. Unfortunately, when I was getting out of the car, I hit my incision right on the door jam. It sent pain through my whole body and I almost threw up. Now I needed to be worried about an infection.

It was finally here! I could hardly wait to get the show on the road. I found out I would receive the St Jude Abbott system. Here I am with my grandson Louie waiting to be prepped for surgery.

First a grid was drawn on my scalp and a halo was bolted to my head. Then I was placed in the MRI machine where a hole was drilled into the left side of my skull and a matching hole on the right side. An electrode was implanted on each side. A plastic cap plugged the holes where my skull used to be. They are raised up allowing room for the wires to come through. I now have permanent horns, haha.

Below is my CT scan right after the 8 hour surgery. The leads were coiled up under my scalp and will be connected in the next surgery. You can see them towards the back of my head.

While I was in recovery, I remember waking up with my fists next to my face shaking uncontrollably and I was unable to talk. The nurse was calling for the doctor because I was having baclofen withdrawals. Of course, I was in a fog coming out of surgery. In my drug induced state, I started crying because I couldn’t tell them I was alive and not to pull the plug. All I could think about was my living will, d’oh!

Here I am in ICU

It was really happening and there were a few things left to do before surgery. The Friday before surgery, we had a family photoshoot. I even cried when my daughter and I took a pic together.

I waited till the last minute to shave my hair. I was worried insurance might change their mind again and I would be left bald – No Thank You! The Saturday before surgery I went to a barber that did a great job cutting my hair so I could donate it.

I prepared a living will so no one had to make any tough decisions in the off chance something went wrong.

Monday was the big day…

It was an emotional roller coaster getting insurance to approve my DBS surgery, since it was for dystonia. DBS is an effective treatment for Parkinson’s, which is approved by insurance on a regular. The success for dystonia isn’t cut and dry. It tends to be more effective for people with DYT1 genetic mutations but it’s not a cure all. I understood it could help me along with my current treatment of medication and injections.

The date finally came, October 1, 2018! I was super excited!

Then came the denial letter. I had a serious, ugly meltdown. I knew that meant long term disability. Uh, hello, I was too young. This was impossible. The dystonia was getting worse by the day. I couldn’t afford my treatments and medication without insurance, let alone only 60% of my salary. For the first, I lost hope. I didn’t have much of a future ahead of me.

My doctors and their staff fought the denial and surgery was back on. I’m ever so grateful for all of them. I held my breathe until the actual day. I was worried insurance would pull the rug out from under me again.

The hardware consists of a neurotransmitter placed below the collarbone. It’s the battery-powered pacemaker portion of everything. The lead is the wire with electrodes on the end. The extension connects the neurotransmitter to the leads.

There was a new hardware system from St Jude, marketed by Abbot. It has four electrodes and the middle two electrodes have segments that can send a more precise pulse for better programming of the brain. It was so new that there was no sample available for my surgery consultation.

My consultation was with a Medtronic, which is the most widely used at the time. It has the same four electrodes without segmental control. They do have a lot of neurotransmitter options like a rechargeable battery model. They were fairly compact like the size of a zippo lighter.

I met with the neurosurgeon and found out the St Jude model wasn’t approved for use of surgery in the MRI machine. This was a big deal because the game plan was to implant the wires both sides in one surgery while asleep. The alternative is an awake surgery and they would only do one side at a time. I would have to be awake to complete tasks when the wire is at a critical point which could affect motor functions. The asleep method is newer and is more accurate.

Because of my occipital neuralgia, the neurosurgeon really wanted me asleep since the halo bolted to my head during surgery sits almost on top of the occipital nerve. If the St Jude device wasn’t approved by the time of surgery, we would use the Medtronic device. Yay, one way or another, I would be asleep!

We finally decided DBS (deep brain stimulation) surgery was the best treatment for me. One of the pre-operative steps was to assess my cognitive functions. If there were signs of pre-existing cognitive problems, DBS surgery could make them worse. The electrodes (wires) are implanted into the Globus Pallidus Interna of the brain. This area of the brain neighbors the cognitive functions. What does all that mean? The electrodes could affect my “mad skills”.

These tests would hopefully identify things like attention, memory, language recall and verbal fluency. They even identify early dementia. I met with the neuropsychologist for about an hour. She was able to rule out depression and a false sense of hope regarding the outcome of the surgery.

Then the fun really started with four hours of testing, which was videotaped.

• The guy administrating the test rattled off a list of 20 items like – elephant, truck, blue etc. and I had to repeat as many words as I could remember
• Then I had to count how many even numbers there were in a string of numbers, i.e. 1, 7, 2, 9, etc. (no cheating by counting on my hands)
• Now I had to recall as many words as possible from the previous list of words
• I was given a new list of words and had to repeat as many as I could remember
• Then I had to repeat as many as I could from the original list of words
• Articulate the meaning of certain words
• A story was read aloud to me. I had to repeat the story the best I could in chronological order with as much detail as I could remember
• I was given another string of numbers. This time I had to count how many times the 2 was given
• Another story was read aloud and I had to repeat everything the best I could
• Again, I had to try to repeat as many words as I could remember from the original list of words
• I was shown 50 picture cards of various items – shoe, baby, apple etc. I had to list off as many items as I could remember
• More numbers, more lists, more stories, more word meanings, more picture cards
• Retell the third story in order and give as much detail as I could remember

It’s been a year since surgery and sometimes I struggle with word recollection. You know that feeling when a word is on the tip of your tongue but you just can’t grasp it? At other times I feel tongue-tied. This happens more often than before surgery. Other than that, I can’t tell the difference.

Mary was my guardian angel!

I was now in my wheelchair but didn’t have the strength to push my chair much at all. If I did push my chair, it was a matter of time before my hands would seize up. Even though I was using voice recognition, I still needed my hands to work.

This is where Mary stepped in. I never asked for help. She just saw my struggle and took it upon herself to be my work buddy! 😊 She would start the day by filling up my water bottle and check on refilling it all throughout the day. If I printed something, she brought it to me. If I needed something scanned, she scanned it for me.

Whenever Mary made a trip to the restroom, she would stop by so I could hitch a ride. Soon she had it down to a science – how to open the doors, maneuver the chair and when to swing it around. Mary put me at ease in this very uncomfortable situation. She was quick at singing a few lines of a song that fit any given moment. There were a few clipped corners and one time when she almost dumped me out of my chair. Of course, that would lead to a laughing fit.

She never made me feel like a burden. If it weren’t for my friend Mary, I wouldn’t have been able to work. Words cannot express the depth of gratitude I have for her.

It snuck up on me that I was having more bad days then good. Soon I was so exhausted from the work week that I would spend most of the day in bed on Saturday. It eventually led to spending Saturday and Sunday in bed. Not only was I missing out on family outings, I was missing out on family time.

Everyone at home really picked up the slack but it was a hard thing for me to admit that I had to rely on everyone for help. I felt old beyond my years. I even started to look older when I saw my reflection in the mirror. The ugly truth was, I simply wasn’t the same person I was a few years ago.

I didn’t feel sorry for myself because I had so many wonderful things going for me. There were, and still are, moments when I fuss it out and then I’m good to go. However, I was wondering how long I would be able to function without major changes. Changes did come quickly and then I was wondering how long I would be able to hold on at all.

My right hip started to seize up when I walked more then a hundred feet or if I stood more then a minute. The knee scooter wasn’t cutting it because I didn’t have the strength to push with one leg and the other leg would start hurt. A wheelchair was in order. Oh, except my hands didn’t work well enough to push myself for the entire day.

I was out of ideas on how to get around my physical obstacles. Sad day indeed!

I couldn’t walk long distances without getting tired and my feet would seize up. Once again, I learned to pace myself.

My endurance was slowing down. By the end of a workday I was tired but by the end of the week, I was wiped out. I needed a more efficient way to get around the office. The first contraption I got was a knee walker/scooter to zip around the office. It was actually fun…and functional. Not to mention it definitely saved my energy and mobility.

My everyday life changed, which meant it changed for my family. I didn’t have the stamina for things like grocery shopping. Kurt really stepped up to this challenge. Like most people, I am picky about certain brands for certain items. I prefer generic for other things because I feel it’s a waste of money to buy name brand. Even though Kurt had the shopping list, he would call or text pics to make sure an item was what I wanted. He’s a pro at it now. 😊

Cleaning the house was becoming a monumental task. Everyone was working a different schedule and Cloe was still going to school full time. Cloe was beyond thoughtful when she bought a one time trial cleaning service! I saw the lady use her rag in what I would call “cross contamination fashion”. EWWW!!! We really lucked with the next person and we hired her on the spot.

It’s funny the everyday mundane tasks I took for granted now became something I longed to do.