[GregD]

I went to my MDS on Wednesday. She feels there has been some progression but also feels i am doing remarkably well for having the disease for 11 years now. In the recent past we have been trying to get my tremor under better control. Nothing seems to work on it.
She asked what I thought about DBS. I told her I had thought about it and have researched it but didn't really feel it was something I felt I needed as yet. She feels it would greatly improve my quality of life at this point. She suggested I at least meet with the neurosurgeon and get his opinion. So they will be contacting me when I can get in for an appointment with him. So I guess it is time to make that big decision. Do I or Don't I?

GregD

[made it up]

Hi Greg,
My thoughts are that when you alone are ready for DBS it's time for it.
I had it a year after it was recommended to me as I wasn't ready nor was I confident at that time but close to a year later I was looking forward to the relief of symptoms and improvement in quality of life that happily it did bring.
Lee

[Conductor71]

Originally Posted by made it up

Hi Greg,
My thoughts are that when you alone are ready for DBS it's time for it.
I had it a year after it was recommended to me as I wasn't ready nor was I confident at that time but close to a year later I was looking forward to the relief of symptoms and improvement in quality of life that happily it did bring.
Lee

I can't say much to help other than Lee makes a lot of sense here. Only you will know inside when it is right.

For those of you discussing DBS as a near future treatment, has your neurologist mentioned that the success of DBS in controlling symptoms mirrors largely your optimal response to meds. In other words, you do well on Sinemet for 5 years and you know DBS is down the road for you- according to my doctor, we have to act within a certain window where meds still work and give you good results in order to achieve the best benefit from DBS. Is this what you all have heard too?

Thanks,

Laura

[Ronhutton]

Hi Gregg,
I am in my 19th year of PD, but I don't think I will ever be comfortable having a DBS. Apart from being a coward! I have heard of both good and bad experiences with it, but when it goes wrong, it really goes wrong.
One question you could ask your neuro, is does it only put the clock back a couple of years but it does not stop progression. If it doesn't stop progression, and think it doesn't, then you have the same decision again in a couple of years. Another question you could ask, is if a cure comes along in the form of an oral drug, does having a DBS mean such a treatment may be denied to you.
As the others have said, only you can make the decision,
Best of luck with whatever you do.
Ron

[chasmo]

Originally Posted by made it up

Hi Greg,
My thoughts are that when you alone are ready for DBS it's time for it.
I had it a year after it was recommended to me as I wasn't ready nor was I confident at that time but close to a year later I was looking forward to the relief of symptoms and improvement in quality of life that happily it did bring.
Lee

Amen Lee, this is true!

BTW- it took me 6 months to get mine in and working. my original one had to be removed due to infection. Would I do it again? IN A HEARTBEAT!!! I would not be sitting here typing this if I did not have my bi-lateral DBS-STN installed. Its been9 years now still no meds, save a 25\100 every month or so.
Ron;
bad outcomes are for all intents and purposes, non-existant, ASSUMING a top flite team, Surgeons like Starr and DeSalles have done hundredds with only an occasional postop infection.

[AnnT2]

Have you combined Amantadine with Sinemet? It did the trick with my tremor.

Ann