Skip to main content

Twisted

Ever since I heard the words "Deep Brain Stimulation" for the second time from a second doctor, I have been reserching it a lot. As much as I want to know everything possible about it before I go through with it, I don't know if it is such a good idea to be watching videos of it. I watched a show the other day about a girl with dystonia who had DBS. Her's was much worse than mine but her hand looked very similar. They showed her in surgery and when they told her to move her hand, she just opened it. It was a miracle. Although she's not cured, she can now do so many things she never thought she'd be able to do again.
My left foot is now pretty much curled in most of the time. I can still walk but it turns in. I have spasms so frequently that I just don't bother mentioning it anymore. It's very annoying. My neck also twitches now to the left at times, mostly when I'm stressed out or thinking about this surgery!!
Well, I'm going to MA a week from Monday to see my neurologist there as well as a neurosurgeon. My insurance and the doctors are just much better in MA. We will be discussing DBS and whether or not I can wait until September when Ryan and I move back there. As much as I want to get better asap, I'd really like Ryan to be there with me.

Miss Hailey is doing very well. She had her 4 month shots last week and weighed 15lbs 13oz. She is in the 88th percentile and healthy! She's discovering new things now such as her feet and her tongue!! She also loves playing with her toys and rolled over for the first time the other day! She enjoys being read to, snuggling, tickled and swimming! I just love her so much and can't wait to watch her grow!

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 ...
13 comments
Read more

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...
Post a Comment
Read more

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...
Post a Comment
Read more