Sunday, February 26, 2017

Botox update-Week Six


I'm at the "peak" of my Botox injections and I can truly say that they have been so helpful in reducing my pain and symptoms. I am so grateful for Dr. Kukurin pushing me to try the Botox again. 

By having the Botox injections I am able to do my functional neurology exercises easier and more precisely. This will help create new neural pathways (plasticity) in my brain and make lasting changes to help my body function and move properly. 

 I am also incredibly grateful to Dr. Leichliter for being an expert on injecting the Botox into the proper muscles via EMG and taking the time to listen to me and answer all of my questions. (There are plenty of them!)

On a scale of one to ten I have been averaging a 7-8. I've had one day where I felt worthy of giving it a 6. I have been sleeping better and do not feel as "wired" all the time. Walking has been less painful and not as scary. My mood and temperament has been better. When you are in excruciating pain it is hard to be fun-loving and playful. I am so thankful to be able to have more patience and quality time with my son. To be able to watch a movie or read a book with him and not having my head shake is like a dream. Brushing my teeth and eating are a little better, but my head still feels like a floating bowling ball and out-of-control at times. I still spill food on myself and spitting toothpaste into the sink is like an Olympic event. 

Sometimes I get down on myself for not being who I used to be. The hard-working, adventurous soul. But then I realize I am still that person. The job has changed and I've never worked so hard in my life. Dealing and trying to manage dystonia is a full-time job. The adventure is not what I planned but it is still a journey. I have traveled to brain centers, discovered new ways of healing and learned how incredibly strong I am-even on days when I feel broken and weak.

 Of course, there is now the anxiety of when does the Botox wear off and how long do I get this slight reprieve from the pain? One day at a time....

Monday, February 6, 2017

Main muscles involved in Cervical Dystonia.

I have been trying to educate myself on the dosing and muscles that are injected for my dystonia. It is hard to explain to the doctor where something hurts and then realize that where it hurts may be caused by a different muscle contracting. It is very complex.

Visit the BOTOX website for more information. 

Thursday, February 2, 2017

Botox update: Week 4

I wanted to give you an update on my Botox injections and how I have been feeling. 

The first few weeks I was nervous. I felt like my neck muscles were getting so weak that they could not support the weight of my head. I felt weak and like I had the flu for a few weeks. I had cold chills and was completely exhausted. 

Eating and brushing my teeth are the most difficult tasks. Anytime I have to be in the position of bending my head forward to eat soup or spit toothpaste into the sink is difficult and my head feels like it's going to flop over and I have no control. I still have pain but it has gone from a 8-9 on a scale of 1-10 down to a 7-8. I'll take it. Walking is still not the most pleasant experience. I sometimes feel disoriented and like a bobble-head. Some days have been a little better. Every day is different. Dr. K incorporated some new exercises into my therapy so it has been nice to have a change in my daily grind. Doing the exercises and the therapy have helped the weakness in my neck a bit.

Here is a link to my daily journal for January if you are interested in reading about my daily thoughts and feelings.