DANCING!

Hi everyone,
Today is December 1, 2009. I hope that everyone had a wonderful Thanksgiving! November has been such a blur and has gone by so fast. We definitely have a lot to be thankful for this year. Emily is doing great and enrolled in a jazz class at the beginning of November and she loves it. She hopes to add an additional class (Hip Hop) after the New Year. It so amazing to see the change in her from just one year ago when she was in a wheelchair almost full-time.
Last December, Steve and I took the kids to Las Vegas over the Winter Break mostly to get Emily's mind off the surgery she was scheduled to have on her left foot on December 23rd of last year. This surgery corrected the deformity to her left foot which developed over time from her "dragging" her foot" and walking on the side. The Dystonia first showed up in her left foot and for two years, Emily was not able to walk straight on it. The constant twisting and pain caused her to walk on the side which permanently damaged her foot. Emily had surgery by Dr. Robert Bernstein at Cedar Sinai Medical Center. Dr. Bernstein performed a tendon transfer and a screw was placed in Emily's foot to keep it straight. This surgery was very successful in keeping her left foot straight. We thought all was good until Emily had her cast removed from the left foot, only to find her right foot was starting to twist. Up until this point, she had not had any symptoms in the right foot, only the right hand.
We discussed the possibility of having Dr. Bernstein perform a similar surgery on Emily's right foot. However, because her right foot had only just started to turn, there was no deformity yet (thankfully). This is when we decided to move forward with Deep Brain Stimulation. Emily has Generalized Dystonia, which means it is progressive, and can effect any muscles in her body (ie: tongue, neck, etc). After consulting with Emily's neurologist, Dr. Jill Ostrem, and her Neurosurgeon, Dr. Philip Starr, we decided DBS would be a better option than orthopedically correcting the right foot to stay straight. This decision was based on the fact that her dystonia was progressing rapidly to other areas, and because some studies have shown that the sooner you have the DBS, the better the results in the long run. So, now you have a little bit of idea as to how we came to the decision for DBS. I should also add that before DBS, various medications were tried to be sure that there wasn't an easier way to treat her symptoms.
Steve and I, and I am sure Emily would agree, believe that we made the right decision.
I will let you know how dance is going and hopefully I can get a few pictures (she is stubborn this way, so no promises!).
Love to all, Marci