Deep Brain Stimulation (DBS): Programming Matters
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- Опубліковано 12 жов 2022
- Deep Brain Stimulation (DBS): Programming Matters, with movement disorders specialist Xenos Mason, MD, from Keck School of Medicine of the University of Southern California (USC). A Parkinson's Community Los Angeles (PCLA) online live program from April 14, 2022. Brought to you by program sponsor Boston Scientific. www.pcla.org.
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Great video. I am putting together a letter for my neurologist to ask her multiple questions about my DBS device. The questions were pertinent BEFORE the surgery but I did not wish to "queer the deal" with questions. I like the idea of remote access using the Abbott device. The Medtronics has some ability to log brain activity so it's good but remote access would be a good solution for me.
Excellent ! Thank you
Thankful
I had my DBS turned on in Aug ' 23, since then I am 100% off meds - so it is possible to go off meds completely or at least reduce med intake. However, I am not sure how long I would stay off meds at 100%. Currently, I am having issues with my balance, and gait - which responded to meds, but not anymore, making me convinced that my balance and gait issue were caused by DBS. Although I am happy that I am now off meds, I was told before DBS surgery that it would impact all symptoms that the meds took away. So the questions on gait and balances and the responses were particularly helpful. One question I have is, how long do you stay in a particular setting to know it's not working? I am on the Abbott system, and I have received various answers from my doctors and programming nurses regarding this question.
Do not go without meds. You need Sinement for DBS to work properly.
Thanks for that. I think you are correct. I will work with my medical team on this.
I wanted the Abbott Labs system with internet connectivity. I am going to work in Sudan so the remote access is a great item. I currently have the Medtronics. A good device but not remote accessible.
I am physically fit. Will the the battery effect my weight lifting and chest muscle growth?? Will I be able to perform at my current max? I will be asking my dr as well
Please let us know what you find out.
@@ParkinsonsCommunityLosAngeles so today I had my dbs assessment. No meds for 10plus hrs. They recorded my off movements ect. Unfortunately when the time came for my first 3rd dose,it did not kick in. At this point my left arm and lip were out of control, never had happened before. So hext 2 doses no on time. Since they couldn't see me at 💯 I have to back July 17th and try again. My symptoms were the worst they've ever been..on a side note, the neurosurgeon told me that dbs will give me the same "on" condition as current. I'm ok with that. PD is no joke! Have to battle and be a warrior. No quit
Hi Ive had my DBS operation in jan 2023 its now Nov 23 it was switched on 8 weeks later its helped my Tremors but its affected my balance and walking which I never had a problem with before.can anyone tell me as my equipment is run by bluetooth can other devices be interfering with my device frequencys etc.
im constantly falling over and walking into things I even felll through a glass pain door and was lucky not to hurt my self too much I recently turned 49 and my legs are full of bruises can anyone tell me if they've had similar problems.Thanks
Go see University of Florida DBS troubleshooting team in Gainesville.
My husband had DBS surgery in Nov 22 till now he has stiffness for 2 to 4 hours most of the day. He takes 2x sinnemet every 2 hours and 2x levedopa at night time. In this case what should we do.
Please let me know.
Sorry to hear this. Please connect with your physician for the best solution, as we cannot offer medical advice.
You need to have him seen by a DBS troubleshooting clinic like the one they have in University of Florida Gainesville.
@ssap3717
I keep going to Neurologist and P.D. Nurse but they say surgery wont stop stiffness. Iam worried because I see him on floor for hours everyday.
This surgery way to complex for layman to understand. Read the book called A Patient Guide to Deep Brain Stimulation by Sierra Farris. Then go see the DBS troubleshooting clinic in UF. You need to make sure leads are placed properly in the brain, sinemet dose is adequate, and he is programmed correctly. UF Florida is the only DBS troubleshooting clinic available in the country. @@skamal8330
Om Datta Guru
What about current spread? They can set it and then it wanders over the next days - spreading farther