Skip to main content

The beginning of great success

Last week, Dr, Novak turned my DBS on.  I didn't have any improvement but I also didn't have any side effects.  He moves slow because they cant turn it too high in one visit.  I went back on Monday and he turned up the right side (left side of my body) to 4.5V and the left side to 4.2V.  As I said before, my left hand opened last time when the voltage was at 4.5.  This time, my right hand was much looser and I could move it a little but my left hand was still pretty tight.  I'm not that familiar with the settings of the DBS, so Im not sure what he had that at.
I went back and saw him again yesterday.  He turned both sides up then had me wait a half hour to make sure I didnt have any side effects.  He then turned it up again, had me wait, then turned it up again.  At the end of last programming for the day, both hands were moving pretty good.  I can now just about open my right hand almost all the way.  My left hand is much looser and I can open it but I cant use it because the tendons have shortened so much.  I now have to stretch my fingers every day and in a few weeks we will know if I need orthopedic surgery to cut the tendons (I hope not!)  I believe the right side is set at 5.3V and the left was at 8V but then he changed the settings and left it at 6V.  (who knows what any of this means!) 
So I feel pretty good but my left thumb has really been bothering me.  Dr. Novak doesnt think it has anything to do with the DBS but it just throbs all the time, so bad I cant sleep at night.  I also have a weird pain of the top left side of my head near my incision.  I am really hoping its just healing pain or something!  Also, since it was turned up yesterday, my left hand has been shaking like crazy.  I may have to turn it off and see if it stops and turn it back on later.  We'll see. 
Anyway, things are looking good and I cant wait to get even more movement!
Hailey is doing great by the way.  She had her 15 month appointment and is very healthy.  She has gained 2lbs and 2in. since her 1 year appointment.  It must be all that eating she loves to do! :) I have been having a lot of fun with her!

Comments

Popular posts from this blog

When Pineapple socks aren’t enough

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc

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 get through the surgery and I was getting

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