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DBS or ultrasound
I was diagnosed with PD 10 years ago. The evolution has been rather slow, probably because I never stopped my daily training including running, cycling, martial arts and Tai Ch Chuan. My main symptom is a tremor in the right hand. After an intensive assessment, my neurologist proposes either an ultra sound treatment or a DBS. The choice is not easy and in addition to the available scientific data, I would love to get some personal experiences from people who underwent one of these interventions.
Thanks
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6 Replies
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Hi Hans,
thanks for posting. have you searched on these topics to see if there are any existing posts that you may find helpful?
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Hi Jean,
I did search, but found very little. Perhaps I am not looking at the right places?
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hans, there are several posts related to DBS and ultrasound. did you go to the right side of screen and enter keywords in the ‘search forum’ box?
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I see a few messages about DBS and a few about ultrasound, but I do not find individual experiences with them. DBS deals with the 3 mayor symptoms, but I only have one-sided tremor as main symptom, and DBS sounds like overkill with a certain risk. But ultrasound is irreversible and does not stop the other 2 symptoms. which sooner or later will manifest themselves more prominently. Is there any experience in doing ultrasound first and DBS later, if necessary? Or are both interventions sufficiently traumatic, that it would be preferable to limit it to DBS from the start.
Apologies if this is confusing, but I will have to make the decision soon and my mind goes from one extreme to another. Thanks for your experience and advice.
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No need to apologise, Hans. I think you’re asking an important question and while research may say one thing, it’s another matter to hear from patients who have had first-hand experience with either (or both) ultrasound or DBS. I can’t personally answer this question but I hope someone else in the forum might be able to add their perspective.
I understand your hesitancy too … it’s hard to make a decision when the consequences might be irreversible or quite life-changing (and maybe not for the better). There is still so much about PD we don’t yet understand. If/when you make a decision, I hope you’ll loop back and update us on your situation. Your experience/perspective will likely help someone else in the future! Thank you for raising the question.
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Well said Ally.
Hans
I can only say for me personally, I would not get DBS; the thought of brain surgery scares me. However, if my quality of life seriously deteriorates, perhaps I may consider it. Not sure you saw the post where I included a link to my friend’s video. She was diagnosed very young with PD and had severe tremors. She has said her life has changed dramatically for the better since DBS . here is a link to her video: https://www.facebook.com/melissa.hahn.5/videos/1711763382220724/
You might also try looking a facebook support groups and pose your questinon there.
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