Skip to main content

DBS

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying. I am mostly scared for Hailey. What if something goes wrong? What if it doesn't work? All I want is to get my hand back and pick her up and squeeze her so tight with 2 hands!! I really hope this works but I am so scared I dont know what to do.

Comments

  1. Marilyn TremblayJanuary 30, 2011 at 6:10 PM

    Oh Mandy! It just makes me so sad to hear of your trials and tribulations with this awful disease. And then it makes me so happy to hear of your unconditional love and happiness you have with your daughter! I know that whatever you decide to do will be the right thing. My thoughts and prayers and love are always with you, honey.

    ReplyDelete
  2. asleeperJanuary 30, 2011 at 7:02 PM

    Thank you so much.

    ReplyDelete
  3. MarleneJanuary 30, 2011 at 9:18 PM

    Mandi,
    It is time to pray to God. He knew you the from the moment he knit you in your mother's womb. He has plans for you. I pray that you have peace and comfort in knowing that God will provide for your needs. Pray for a sign that DBS is right answer. He will tell you, you just have to trust in him completely.
    Good luck, Darling! You will find what you're looking for.

    ReplyDelete

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

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 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