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johnny

Is DBS being oversold?

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Awhile ago there was a DBS presentation at a local PD support group.

It sort of reminded me of a nfo commercial.

They didn't even mention rytary or entacapone.

Quick to downplay risks and play up benefits.

Personally with the poor care many here receive the last thing  would ever do is trust in a bran operation

The doctors like the idea we can somehow be programed a lot easier than listening to another human being.

On a bright side Fathers day turned out great with a visit from my son and family.

 

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Hi Johnny,

There may be something to your concern.  At my 5 year mark, I was asked if I would consider DBS.  My doctor wanted to put in a referral for an evaluation.  I responded that the meds seemed to work well for me and that I hoped I would never have to face DBS but also wouldn't rule it out down the road.  I also wonder about DATscans - are they being over sold too?  Seems like a simple levodopa challenge is an effective diagnostic tool.  Better yet, time will reveal the answer for most people. 

Glad you had a nice Father's Day.

Gardener

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15 hours ago, johnny said:

Is DBS being oversold?

Awhile ago there was a DBS presentation at a local PD support group.

It sort of reminded me of a nfo commercial.

They didn't even mention rytary or entacapone.

Quick to downplay risks and play up benefits.

Personally with the poor care many here receive the last thing  would ever do is trust in a bran operation

The doctors like the idea we can somehow be programed a lot easier than listening to another human being

As a person with DBS, I would definitely say yes! I have no regrets about my decision, and personally benefit greatly from it, but am aware of cases where it may not have been appropriate for others. In fact, I was recently asked by my DBS team to speak with another candidate about his concerns with the procedure. After some discussion I recommended he put off the surgery for now.

But think about it ... a specialized team of doctors and therapists are assembled to evaluate and treat DBS candidates. Some of these centers are without a doubt better than others, yet in any case it is quite an expense. They know of the great possibilities and are anxious to spread their good deeds. But now, 16 years after being approved by the US FDA, more centers are competing for potential candidates. Pioneers in the field are being joined by others and they all need to show a return on investment. All while the pool of potential traditional candidates is shrinking. There is bound to be some "aggressive" players in the field looking to expand their horizons. Check out this article:

Quote

Most contemporary accounts of DBS therapy give the impression that it is the inevitable consequence of scientific discovery and medical progress, as if the intrinsic qualities of the DBS technology were sufficient to guarantee its consolidation as a therapy for PD. Yet DBS was originally developed as a treatment for chronic pain – a therapy not currently approved by the FDA. The history of DBS is, in fact, complex. In this article, I will explore the development and stabilisation of DBS, focusing predominantly (but not exclusively) on events within the United States. Far from being inevitable, the development of DBS therapy was shaped by professional and commercial interests, parallel developments in medicines, and medical device regulation, and was contingent upon a range of factors, such as the flexibility of the technology and the development of standardised clinical assessment tools.

The article also touches on the ethics of DBS , especially due to its psychosocial effects.

I hear of many failures in this procedure and considered them myself. But I was to the point where I felt there was nothing to lose. My dyskinesia was debilitating and dystonia so bad I could only writhe in bed for hours every evening. Never mind the many other common symptoms. For some of us it is a "no brainer". Others, ?

Edited by Oakman
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I believe it is being oversold in some cases. I had DBS 2 years ago. Outcome has been mixed (serious speech & language, gait & balance problems, with serious psychosocial consequences), but I'm still glad I did it because  my very bad tremor is gone. So I'd say only agree to DBS if you are satisfied that there is more to gain than to lose. Will you be better off with it, even if you have serious side effects? Do you have the type of symptoms that are likely to be improved? Try to inform yourself as well as possible by reading up on it from various sources & talking to  your doctor. Also, a good programmer can make all the difference, but how do you know a good one from  a bad one? No sure-fire answers, but you must try to advocate for yourself.

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Yes. DBS has a commercial element attached to it due to its high tech expensive gadgets. They make a fortune selling these. This is why you got to be very careful about going into DBS. Get a second or even third opinion before doing DBS and even then pause and think twice if you really need two holes drilled in your head and permanently be attached to a machine to the rest of your life. Even the reversible element of this is a marketing gimmick. This surgery cannot be undone. Your scull want grow back and when the leads are removed it will likely create internal bleeding that will have irreversible side effects. Only do DBS when you truly got nothing to lose and if possible, get one side done at a time before doing both side so you can gauge its effects. 1/3 patients only need unilateral DBS on one side and most centers arbitrarily insert two leads on the same surgery. 

Edited by waruna01

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In my first exposure to DBS as a "potential future", I was not pressured in any way . In fact, hanging my hat (figuratively) on DBS was discouraged because of my age, response (+++) to drugs, and active lifestyle.

My MDS spent time explaining the multi-dimensional team that would do the evaluation and judge my eligibility for DBS. There were many walls to climb over before being selected. Now, as I read the this thread about promoting DBS, I mentally substitute Sinemet or other PD drugs wherever I see "DBS" and observe the same critiques could be applied. Like it or not, we are in a profit-driven medical system. Motives will always be suspect, but my care team has never given me one iota of suspicion.

I have not even thought about DBS as a personal decision - if it is presented to me (unlikely) I will decide with complete consultation with my team of experts.

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