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Hope

About 10 months ago, I began re-living the nightmare I had back in 2008.  My hands and feet began curling in and over these 10 months my symptoms have just continued to get worse and worse.  I have been going o Brigham and Women's Hospital to have my DBS settings changed, I received botox and tried different medications.  Nothing was working and the frustration was taking over my life.  I spent hours and hours day after day searching for doctors, and treatments and answers.  Two weeks ago I met with the neurosurgeon and my neurologist, who told me basically there was nothing else they could do.  They said they could do more botox, change my settings or make a lesion in my thalamus.  I wasn't pleased with this appointment but tried to stay positive because he told me he would call me within a day or two with a date for botox.  I never heard from him.
I pushed and pushed for a second opinion.  I am done waiting around and having this pain every day.  I spoke with the DMRF, who recommended a surgeon at Beth Israel and I called them daily for a couple months until they scheduled me an appointment.  On Monday, I went in to meet him and figure out what is going on.  I knew as soon as he walked in that he could help me.  He explained everything, examined me and LISTENED to me! He said that the impedance numbers are wacky again, meaning there is likely another short.  He scheduled me for surgery next week to have it replaced.  I am desperately hoping this helps at least one side.
He also suggested I meet with his neurologist and have my settings on my right DBS changed to the settings that worked for me for 6 years.  Unfortunately that neurologist can't see me until October, but I am hoping they will have a cancelation.  This doctor is the first doctor that has given me hope that he can help me and fix my DBS.  My surgery is scheduled for next Wednesday and hopefully after that, at least one side of my body will start to improve!
Thank you for following my story and for all the love and support through these difficult times.

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