I made it! It's not a super risky surgery, but it is brain surgery. I say I made it because even though I am a nurse, this stuff freaks me out! Especially because in the medical profession I've learned there is human error. My doctor is leading in the area, and uses calculations and a robot to help place DBS leads. I am so grateful I didn't have to be awake like most DBS patients do. (My doctor is leading in the area and found better results with asleep DBS.) I was half ready to jump out of the bed on operation day and say "just kidding!" because I haaaaaate IVs. I am the world's most difficult stick and super sensitive to catheters in my veins...and an experienced nurse of 20+ years had to stick my hand and wrist four times, and the day before three times. But, I knew I had to see through it because I am extremely grateful and so SO lucky to have this procedure. No IV fear of mine was gonna stop me. It's silly but I seriously can't do IVs haha!
We decided to stay in a hotel the night before the early morning MRI scan, and of course that night because the surgery was early morning next day. My mother-in-law so graciously came down to support me and Austin, and my dad flew out to see me through the hospital stay! We stayed in a Residence Inn, and my dad treated us to our favorite vietnamese place in Denver (Saigon Bowl) where they have bubble tea shakes.... This was such a treat! We took Susan to IKEA too for the first time. Best distraction ever! I couldn't eat either nights after midnight so I ate a disgusting amount of Swedish meatballs and vietnamese food both nights around 10pm.
Step One: MRI brain scan under general Anesthesia
In order to do the DBS procedure asleep, I had to have a long and thorough brain map made via MRI. This was my big goodbye to the MRI machine! Once you have implants in your brain that are metal... you get the idea. I have had several of these in my life so it wasn't that sad! I got to see the machine one last time (Hey, my nurse side wanted to see and say goodbye! I also got the opportunity to see two lithotripsy procedures before the implants, of which I won't get to again so that was awesome!) As I was looking at the machine, they set me up for general anesthesia. I didn't have to have the big intubation, just a short airway adjunct which spared my throat. I woke up with these two guys on my head! I was told to keep them on, and so I was super careful that night to sleep on my back. I did NOT want to budge them because they correlate with the brain map they just made.
When I woke up from this round of general anesthesia, four nurses and the anesthetist were over my bedside and I heard the anesthetist say, "Don't worry, it's just her dystonia, she's not having a seizure or bad reaction." It was then I realized I was violently moving around in my bed and I had no control over my muscle movements. My head was swinging side to side, and my arms and legs were jumping around like mexican jumping beans haha! I could not believe it! Anesthesia apparently affects dystonia when you come out. I had two super minor surgeries in the past and when I got my wisdom teeth out, I recall swinging my head side to side. I always just thought that was normal.
My dad hadn't seen my dystonia at it's worst before and I knew he had arrived at the hospital during the mapping. I told the nurse, "please warn my dad before he comes in, he hasn't seen me like this before." My dad held my hand when he came in, and my mother-in-law and Austin were by my side. Eventually the spasms wore off. I needed help the the restroom and to get dressed because anesthesia really pissed it off haha! The PACU nurse was super nice, and laughing at me because even though I had a lot of sedation, I was reeling off nursing stuff to her haha! I think at one point I noticed I was hooked up to the EKG and was all confused. I was like, "oh! where did this come from? WAIT am I hooked up to telemetry??" Then I grabbed all the cords in the confusion which caused static in my heart wave and looked up at the telemetry monitor and looked at my family... and said all serious-like "Oh yeah, that jumble is called artifact because I touched it. I'm fine." Hahaha! I did a lot of weird things! The nurse heard I was wearing a sweatshirt with a nurse joke about EKG and "tachy christmas sweaters" but I had it packed away and told her I'd show her tomorrow if she was my nurse!
Step Two: Lead Implantation
My family took this photo while waiting for me in surgery :)
So you know the whole bit with the IV insertion... not fun! But we got there! I was super panicky afterwards because the idea of brain surgery had finally hit and was scaring me. I was pre-op'd alone without my family and had to sit there for a bit without them. They had this light cover on the ceiling that was all sky and butterflies. Not my forté but it was helpful! I was super scared about a lot of things. Mostly that it wouldn't work or this and that, or what if I was the unlucky very few that get a stroke yadda yadda.
I see this guy in a red sweater, bald and a bowtie with some severe glasses kinda peer in like he was surprised to see me, then he comes towards my room and introduces himself. I had this procedure done at an Adventist hospital, so it was a religious hospital. He was the chaplain and introduced himself. He comforted me and asked if I wanted a prayer and if I had a religious preference. I don't know why, but this was an amazing moment for me because obviously he was a Seventh Day Adventist and they historically don't like LDS people so much. He didn't even bat an eye and said a very, very nice prayer. I don't know why but that was a moment that really stood out. He asked if I wanted the service to come by the next day and I said yes. I really liked that aspect of the hospital. I also had a foot massager person come in too right before I was wheeled in and with my family. I think we talk a lot about the whole person in nursing school, but it's so different from being the patient and experiencing a real need for all aspects of the person.
My doctor came in and so did the anesthetist, told me all the scary stuff that could go wrong and to sign, and that was that. I was told because the facility and standard of care with DBS was new (2015) there would be a LOT of people in the room to observe, help, and learn. The bioengineer team behind the DBS unit and robotics would also be there to observe. They weren't kidding. I was wheeled in and there were a lot of people around equipment and the walls. The OR nurses knew I was a nurse and a student and showed me the robot quickly, and a few other things in the room. The anesthetist started medication in my IV and the last thing I remember was her showing me the propofol milky mix and saying,"Okay! This stuff is going to put you to sleep now."
So here I am post-op in the ICU. And the next one is a day later haha!
This time in the PACU I woke up to the same nurse I had for the brain scan. I recognized immediately that I was not moving or spasming at all. I was still.
So I need to explain something really quick, the lead placements (shown below) are done during this procedure, and the pacemakers and remaining wires are done at a later date (on Friday I get them!) so initially there are no pacemakers or any signal. The top part of the device is just placed. But because you place the leads and damage the brain essentially causing trauma to the area, the overstimulation that causes dystonia is stopped until the brain heals (anywhere from hours to days to a couple of weeks.) This is called the honeymoon period because you are relieved of symptoms, in some cases and in my case completely for a short period of time.
I was still. The nurse was just staring at me. I was in disbelief and in a crazy post-sedation haze. I woke up again and started saying, "It's gone! It's gone!" It was an emotional moment with the nurse. I have never ever remembered my body so relaxed, so calm, I don't know how to even begin to describe it because it is so difficult to. When I was a bit more alert, she asked if I brought that sweater. I said she could look in my bag. Mine has a different EKG on it than this picture:
....But you get the idea. Haha. Funny nurse joke. Anyway. I started in my confusion explaining to her that on my sweater it's not tachycardia, but instead a second degree AV block type II... she would not stop laughing and said she was shocked about everything, the surgery and how I was even speaking nurse stuff coming out of surgery! It was funny. I went in and out this whole time.
I woke up again to my doctor, and he was walking alongside my bed which was now being wheeled to the ICU. He asked me how I was doing, and I became more aware:
It's gone! It's gone!
He was so happy, and said that was exactly what I could expect come the pacemaker programming. I think he was super excited the placement worked so well! He had visited with my family during my recovery period and told them that my right lead had to be placed twice. It doesn't happen to often, but during the surgery he was not happy with placement. He made the decision to pull it out and reinsert. Which isn't ideal because you carry the same risks with reinsertion all over again. But he was able to get it and was super happy with placement. Mine got placed in the nuclei of the basal ganglia which is supposed to inhibit unwanted muscle movements. But obviously didn't.
So you can see those leads go into a lot of brain! My doctor also met my dad and asked if he was Filipino. My dad is Japanese and family traces back to the southern tip of Japan I believe, and my doctor has done research and found that this is common in that race, and may have been the genetic link. My dad was super distraught over this for obvious reasons but I don't blame any of this one bit on that or him. Who even really knows where it came from. I find it interesting, but also irrelevant. I am so grateful that I have the soon to be complete DBS unit!
I did not know I'd be in the ICU or a critical care patient! Now, it totally makes sense because neuro-checks are needed all through the first 24 hours. I also had to see a team with physical therapy, speech language pathology, etc. I was surprised that on my DBS team there was a PA and two nurse practitioners! That was so cool to me! They all were surprised with my results and progress. So all through my first night I was woken up for neuro-checks every hour. I remember a discussion between to nurses during the night with a pen light shining on my face saying, "Does the right side look droopy to you? Come look at this." It made me comfortable with the nursing care there because they were so cautious. The oxycodone 5/325s made me so sick... I was nauseated anyway from the head pain but those were terrible! I had a nurse tell me she would try IV acetaminophen (tylenol) and that did wonders for my headache and pain! I just loaded myself with those afterwards too because those oxy's were terrible. I also received Decadron through the 24 hour period which is a corticosteroid that reduced my brain swelling. That burned so bad through my hand IV! Oh my word I got so nauseated after every dose! I had to be loaded with Zofran (anti-nausea/emetic) because the hand was so bad! I also had vancomycin which is a heavy duty antibiotic throughout the night. Longest hour of IV administration ever too because it's hard on the veins and hurt so bad. So Zofran was my best friend haha! And probably the nurses' too because who wants a barf-bag patient lol! I also woke up to a catheter which actually wasn't as bad as I thought. I had some real fears about that before the surgery!
I had to do a PT session, which I passed. It was very difficult for me but I did it! SLP came in next and I actually scored lower on the test but still passed because my recall memory wasn't that great. It is so weird to have your brain messed with. You think you're fine but then you start noticing things. I am completely fine now, it was just the brain swelling. Family noticed that I would forget things they had told me. Once I had the okay from SLP, I was free to go! The RN and NP came in with my discharge information. I was not allowed to wear hats or scarves after the procedure because of infection rate increase. So good thing I didn't have to cut my hair! I did cut my hair shorter initially to make things easier for me during the dystonic storm time (you won't believe how hard it is to hold a blow dryer and straightener up, and comb your hair and put in a twisty tie is when you have full body cramps.) And I was super glad I did for after the surgery because I was told I needed to regular shampoo the sutures every single day. Oh my word that was SO painful. You can't see the incisions, but I have what I call a headband of skin flaps.
It is from ear to ear. You can see a staple in that picture actually! I have big incisions on both sides of my head in the shape of an M where the two holes were covered. I also had head scaffolding and screws went in above my ears and behind my head to hold me still and exact for the procedure.
It was time to go and also my dad was ready to head out, and my mother-in-law snapped this shot of me in my dazed and hurty state haha:
Because the nurses said in the ICU that rarely does anyone get to walk out of the Critical Care unit! Including DBS. I got very, very lucky with my honeymoon period!
Tomorrow we leave for the second portion of my surgery, my dystonia has come back pretty heavily to my left side. But those pacemakers will be put in and programming starts almost immediately so I'm excited! The programming is a process and can take upwards to a full year to fine tune everything, but results are well underway the first three months.
Pacemakers are not risky, but are the restricting part of the surgery. I can't lift my arms up over my head or lift anything heavy for 3-4 months! They go under the muscle just under the clavicle so they have a lot of vessels and vascular area to ward of infection. But that hurts cutting into muscle! I'm being a baby when in reality I am so excited and so very thankful to have this. I know not all dystonia patients get the opportunity I am getting and I really am getting a new lease on life. Thank you to everyone who has supported me and has prayed for me!
We stayed in Colorado just one more night so I could rest. It was so nice having my family there. My mom was able to come next day, and she has been taking care of me these last two weeks. Lance (my step-dad) came for the last few days and I have been doing remarkably well! I will have to write about our adventures another time... it was just so wonderful with her out here and she was so helpful to us. Austin still had finals!
Tomorrow we head out, and Friday is pacemaker day!
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