This month I was fortunate to interview Donna P. to learn about her experience as a research subject in the Neuravive focused ultrasound clinical trial for ET.
Donna brings an enthusiasm for life in everything she does, whether that is cooking her favorite delicacies or playing games with her grandchildren. This is why when the opportunity came for her to do something about her essential tremor (ET), she took the bull by the horns.
Donna has lived with essential tremor for over 30 years. While medications worked for her early on, over time their effectiveness wore off. Her neurologist wanted to do more to ease her suffering, but the options were limited.
About 4 years ago, her neurologist heard about a clinical trial using focused ultrasound to treat essential tremor. He recommended that Donna contact the team at Brigham and Women’s Hospital in Boston to see if she was eligible to participate in the trial of the focused ultrasound “procedure”.
Donna doesn’t like the term neurosurgery for the Neuravive treatment because the approach is incisionless––there is no need to cut through the scalp to treat ET.
Once accepted into the trial, Donna had to go through cognitive and medical tests before undergoing the procedure. She received a detailed explanation of the potential risks involved, ranging from temporary numbness and tingling to possibly more serious risks, such as a blood clot. However, she was very motivated and willing to take on the potential risks because of the toll ET was taking on her life.
From early stage testing to post-op follow up, a team of doctors, nurses, and physician assistants were actively involved in Donna’s trial participation. On many occasions over the course of our conversation, Donna stressed the invaluable help provided to her by the medical research team. She did not feel alone.
The research team helped her understand what focused ultrasound is and how it treats ET. They also described in detail what to expect during and after the procedure. Over the course of the procedure, the team’s support was especially critical. Donna said that while she was in the MRI, the neurosurgeon communicated to her what was happening, down to how many seconds the ultrasound waves would be focused on the small spot in her brain. This gave her the feeling that the team had things under control.
For Donna, the Neuravive treatment was an overwhelming success. She described activities she now enjoys that were impossible before the procedure. She has a distinct memory of being able to eat soup with a spoon right after surgery and sharing this feat with every doctor or nurse who came to see her.
It’s been 2 years since Donna’s treatment. She is proud to say the Neuravive treatment has brought her tremor under control, and her quality of life has greatly improved. Donna recently shared her experience with the treatment at an ET patient event in the Boston area. It was clear that members of the audience appreciated her insight into her experience with the Neruavive procedure, but most importantly valued her optimism in managing her condition with the help of treatment.
Donna’s brave venture into a clinical trial is yet another example of her positive attitude, and she wants all ET sufferers to share that hope in their lives.
Disclaimer: This testimonial may not be representative of all patient outcomes.
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