DBS

[Jlloy5]

Anyone that has had DBS, would you please share your experience? I’m highly considering starting the approval process. I’m 45, dx in 2008, and have exhausted medication options. I’ve tried diet, exercise, HDT.

[Juliegrace]

If you are tremor dominant you might consider focused ultrasound. Go to fusfoundation.org for info.

[ion_ion in reply to Juliegrace]

Very interesting!

[Jlloy5 in reply to Juliegrace]

I discussed this with my dr, and focused ultrasound creates lesions on the brain that are irreversible. DBS is completely reversible.

[Juliegrace in reply to Jlloy5]

I was part of the early research of FUS for dyskinesia. The lesion is tiny and I participated in the research because it is so much less invasive than DBS.

[Jlloy5 in reply to Juliegrace]

Did it work?

[Juliegrace in reply to Jlloy5]

It was not as successful for me as it was for many of the other participants. As I already mentioned, the dyskinesia trial has not yielded the results they had hoped for, which is why the study is ongoing. I had some temporary relief, but not enough to call it a success.

[PDConscience in reply to Juliegrace]

As l recall, trial subjects receiving treatment (vs placebo) received only a unilateral lesion (half of a treatment). Results were inconclusive and full bilateral FUS treatment for PD (pallidothalamic tractotomy) is not yet offered in the USA.

[Juliegrace in reply to PDConscience]

I was in the early, open label part of the study (patient #5). Yes, it was unilateral, but since I present mostly on one side it didn't bother me. So far, as a treatment for dyskinesia FUS has not been as successful as they hoped. When I suggested Jlloy5 look into it, I prefaced it with if she is tremor dominant because that treatment has been approved in the US.

[PDConscience in reply to Juliegrace]

Since you've ignored jlloy's question ("did it work?"), I'm assuming you either received the placebo or are otherwise unable to report any definitive benefits(?).

*FUS has been approved for treatment of essential tremor, not for treatment of PD.

[Juliegrace in reply to PDConscience]

It was approved in Feb for the treatment of Parkinson’s tremor.

[PDConscience in reply to Juliegrace]

Link?

[Juliegrace in reply to PDConscience]

You can search it yourself.

[PDConscience in reply to Juliegrace]

As already stated, FUS treatment for PD remains unavailable in USA. Still ignoring jlloy’s question?

[danfitz in reply to PDConscience]

Stated in error. FUS was approved by the FDA.

[PDConscience in reply to danfitz]

Murmurs from the tool shed have prompted a double-check - FUS was approved (“indicated for unilateral thalamotomy”) for PD last December. This may account for the fact that ongoing trials are limited to “unilateral” application.

fusfoundation.org/the-found...

[ktbate]

I just got approved. After much research I've decided on the Boston Scientific devise. Also wan't to be asleep because I have dystonia pain in my left leg and could not sit for 4-5 hrs. during surgery. What device are you considering?

[lesleyd]

Has anyone EVER reversed DBS? For me it was fantastic, although it's important that you have a good programmer/ post-op treatment.

[ConnieD in reply to lesleyd]

How long ago did you have it done, May I ask what symptoms are better now? Thank you😊

[Jlloy5 in reply to lesleyd]

Not to my knowledge.

[Lheinlel]

Jiioys5-I had the DBS surgery 1/3/2019 on one side. I was terrified and was so stressed. I was awake for the whole procedure which is why I was scared. Turned out to be fine. I even watched the procedure on a TV. There was no pain at all. The drilling wasn’t horribly loud and was painless. If I had known it was going to be that easy I would have saved myself a lot of worry and stress. Go for it.

[Jlloy5 in reply to Lheinlel]

Thank you so much. That is exactly what I needed to hear.

[CplParkinson]

Had the procedure done 3 years ago and feel great. Main help had lessened the amount of medication needed, my dystonia is almost completely gone. I haven't had an episode in years. Only time it did was when my unit shut off some how. I've heard sometimes security devices at airports or the scanners at business doors. But I don't think that affects the newer devices.

I mean it's not perfect but greatly improved life. It was all good until they woke me for the test the leads. My dystonia was so bad I'm glad my head was strapped down. As soon as the first lead was finally done and they could give me some medicine or back to sleep did I then feel better. But just the leads in helped so much.

[movinngroovin1]

I would highly recommend it. Loo for the surgeon with the most experience as well as an excellent tuner. Love mine! It gave me back my life 5 years ago!

[lesleyd]

Two years - completely sorted my tremors, and there's also all the extra attention!

[Cjbro2000]

I’m also wondering about this procedure. Is the device similar to a pacemaker for the heart where the patient goes in for periodic monitoring to be sure the device is functioning properly? Also wondering about battery life. At some point is another surgery required to replace the battery? It certainly sounds like a god-send to many people!