Fowki - DBS 4 years post dx.
Norcalgal - 3.5 years post dx.
Jgreentree - 7 years post dx.

Is DBS now the treatment of choice so early. This is major brain surgery carrying the risk of stroke or death, surely it should be a last resort.

With pwp having DBS so soon can we doubt that the outcome is on the whole positive, i.e. young patients, not too far progressed.

Seems Medtronics marketing strategy is working anyway.

Neil.

PLEASE PLEASE tell me you dont have Kaiser!! I do and even though I havent been very happy wiwth the information I get from them I would hope I dont have to face this kind of treatment.

Norcalgal

Think you've hit the nail on the head there Neil. I sent my DR a note asking about the nicotine patch therapy and he told me flat out "We do not use nicotine to help reduce the risk of PD. There is not enough evidence."

THANKS;I have turned of the stimulator & I instantly go limp (I couldn't even stand up by myself)NO dyskinesias; everyone in my neurological "team" says to be grateful & optimistic... I keep thinking about last year, I could do almost anything I wanted, now I have to figure out how I gonna walk the 50 ft to my mailbox & back. I have tried all of the most highly rated programmers in my area, and yet I have to return to an early program written back in OCT 2011... this older program isn't working as well as it used to either...every programmer, be it an MD or RN, generally tells me they've done the best they could... I think that with the fast progression of this disease I'm headed for a wheelchair soon. Would you know of anyone who could look at the programming spec's (which elements, plus/minus phase ,duration,bandwidth, and voltages)..maybe just maybe therein lies the answer...

JGreentree Sounds like it's time to fire the "team" and move to another one. Hopefully they are not the only team in town and you can get a second opinion from another. Something is definitely not right with your DBS surgery. Has your team considered replacing the implanted pulse generator with a new unit. Since it was so effective when you first had the surgery and suddenly quit working correctly I would be very suspect of a malfunctioning generator. That unit is basically a battery, computer chip, and system board connecting the leads that are implanted in your brain. I've seen many a defective computer system board and chips in my day. They can and do fail sometimes doing crazy stuff before they die completely.

You have a touch of the cynic in you, No? The reason they are suggesting the surgery for Young Onsets is they progress slower than an older person. The DBS will keep you at your best day on drugs. That is why I wanted mine done 8 years ago. I was able to cut my meds to a 1/3 of what I took prior to surgery. Researchers other than Medtronic were the first to discuss this.

Medtronic marketing strategies, I have no idea. Does having DBS done earlier with Young Onset? You betcha!

Dianna

JGreentree,
Sorry I'm not in UK or US which I'm guessing is where you're located so can't help you with programmers.
That's where a DBS group might come in handy with some positive ideas for programming and reviewing the placement of electrodes.
Can you alter your settings yourself with the patient supplied programmer?
I can since last battery change and experiment a tiny bit at a time up or down and find it's much more satisfactory compared to having been put on the spot with a neurologist decide what's best for me and often being left worse off and needing to return and go back to previous settings.
If you can go up and down perhaps go back to the programmer and they can widen your setting range and it can become a DIY job!
Pulse width I can't alter.
Another thought is to lower the voltage (either you or DBS consultant) and increase levodopa eg Sinemet intake and that might work for you.
When you turned yourself off was it for several hrs or just a short time?
If your symptoms returned with a vengeance I'm thinking you might still be benefitting.
Is your speech better switched off?
Just some thoughts PM me if I can be of any further help.
Best wishes.

We all have a touch of the cynic in us however to me it is simple risk versus benefit. I am unwilling to risk DBS as the risk doesn't outweigh the potential benefits for me at this point in time.

I have no doubt Medtronic are trying to maximise the target audience for DBS and the most obvious unexplored market is yopd. Is it ethical to promote brain surgery when not absolutely required, I suspect Medtronic and its shareholders would respond with a resounding "yes".

As MJF has said 'the next time they go into my brain I want it to be to get it done'. Until that time dbs remains a last gasp option for me.

Take care,
Neil.

personally, i don't think anyone takes getting a DBS lightly, i also agree neurosurgeons don't get paid unless they perform neurosurgery. i'm happy it is an option, it wouldn't exist unless some pd'ers symptoms were insufferable. and it does seem as time goes on and neurosurgeons/staff get more experience and the technology improves it deserves greater consideration. that said, lots of clinical trials ongoing that might provide something as good or better, i hope. cogane not included. ceregene next up.

Dear Neil,

I have a genetic type of PD. My one sister was diagnosed with PD before me. She made the decision to continue to work and have no children. She was forced out of her job before she wanted to stop working. I feel she took the harder path. My oldest sister shows no signes of the disease.

Selfish me, I worked a few years, decided to focus on finding the best way to live with this disease. Went on disability, read articles, talked to reachers, and attended support group meetings.

Now my eldest sister is forced into caretaking for both our parents,since she is the only one who can. My middle sister is only recently undergone DBS. Evenmy eldest sister notices the difference and believes she waited too long. It has had little effect on her.

Three roads traveled on. Yet of the three sisters, not one would change their decision of how they lived their lives.

We all react to the disease in different ways. But I hope we can also be tolerant of each other and appreciate the different ways to live with our disease. Neil. you are welcome to be cynical. II may disagree with your reasons but I am in noposition to judge your decision as right or wrong. It is just different from my experiences.

Dianna