Skip to main content

its over!!

Last wednesday, my parents and I got in the car and started our trip to New York around 3am.  It took just about 3 hours to get there so we arrived by 6:00.  My pre-op appointment wasn't until 7 (arrival time 6:45) and the doors to the building didnt open until 9:00 (didnt really make any sense).  Anyway, I ended up behind a doctor who could get in so we managed to get into the building.  We went to Dunkin Donuts and got some breakfast and wasted time until I could check in.  By 7:00, I was heading in for pre-op and didnt really know what to expect because they said it could take 2 hours but last time it took less than an hour.  They did all my vitals, asked about my medical/surgical history and sent me to the lab for blood work.  It all took about a 1/2 hour and then I didn't have my appointment with Dr. Pilitsis (the surgeon) until 9:15. We wasted some more time then went to see her.  She explained what was involved in the surgery, about how long it would take and what she was going to do.  She was going to bring me into the OR around 8:30 and said she should be done by around 5.
We were out of her office by 10 and had the whole day to kill before the big day.  We went to 2 malls and had a lot of fun laughing and just spending time together.  We got to the hotel around 3 and all crashed!!
The next day came quick and I had to be at the hospital around 7.  They gave me an IV and I met everyone who was going to be in the OR with me.  They finally came and got me and gave me something to relax around 830.  I remember quite a bit from the surgery since I had to be awake for most of it.  They shaved my head, attached the frame, brought me for a CT scan then started.  I remember them programming it and I had to keep saying "its a sunny day in albany" and try opening my hand.  They were making sure it helped my hand but didnt affect my speech.  They had to program it almost all the way up for my left hand to open but my right hand opened much quicker! 
When I woke up I felt pretty good.  I kept asking for my parents and it seemed like forever before they came in.  I didnt sleep that good that night because they woke me up every hour to do a neurological exam,  It was kind of annoying.  The next day, I had to have another ct scan to make sure everything was ok.  I got sick after that, I think just from moving around and stuff but then I felt much better and my parents brought me some lunch from panera! yummy!!
Friday afternoon, they discharged me but said I had to spend the night in a hotel near by in case anything happened.  I got sick again Saturday morning but other than that I felt pretty good and we were on our way back to MA by 730 am Saturday morning!  I got to see my wonderful family for Christmas eve and spend christmas day with my beautiful daughter and amazing fiance (who proposed christmas morning)!!!  It was such a special day.  :)
Im heading back to NY friday to have my staples out and hopefully the programming will start shortly after!!

Comments

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 ...

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...

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...