Skip to main content

DBS Surgery #2 and First Programming

On Monday May 2nd, I had the second part of my DBS surgery. I got there at 6:15 and by 7:30 I was being wheeled into the operating room. I dont remember much after that until I was waking up in recovery. I had a severe headache so they gave me pain medications and wouldn't let my parents come see me. A little while later I had to go to the bathroom and did't want to go on the bedpan so they tried getting me up. I felt pretty dizzy and didn't feel that good so they tried laying me back down. I don't remember much after that except the nurse yelling "I need help" and there were 4 nurses picking me up. I must have blacked out. After that they gave me so many pain meds that they had to keep telling me to breath. It was very scary. My parents could finally come in after all of this and I was so happy to see them! My nurse wasn't the greatest but the nurse I had next was even worse. I had one nurse from 4-9 and she was absolutely terrible. She ca,e in once to check on me and didn't even know what I had done! At 9, I finally got a nice nurse who checked on me and helped me up and take care of me. They never found me a room so I had to sleep in the recovery room. I was the only patient in there so it was pretty spooky but thankfully my mom got to stay with me. Tuesday morning I woke up and had some pain in my neck but it wasn't too bad. By 12:00 noon I was going home. I was so happy to go home and finally see my baby girl. Even though I cant hold her for another 4 1/2 weeks, its good to be next to her and have her sit on my lap.
Today, I got "turned on" and programmed. It took quite a long time to get the settings right so I didn't feel weird. At first my left eye was twitching and my left hand felt weak. At one point when the settings were pretty high I felt like I couldnt talk. So, he turned it down after that and had me leave for an hour and then go back to his office to let him know I felt ok. He said its a very good sign that my hand felt weak and its a step in the right direction, its just going to take some time. I have to go back next week to turn it up a little.
This is the first time in my life I have felt so hopeful that Im going to get better and be able to use my hand again and take care of Hailey!! I am very excited!!!

Comments

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...

Dystonia awareness

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...