DBS

[Aleagles]

Keen to hear if anyone has had DBS implants if so what are the pros and cons. Trying to weigh up benefits as been offered the operation Any unexpected results good or less good? Thanks

Al

[horsplay]

I had dbs last year. It has changed my life for the better! I now walk without a cane/crutch. I do still take meds however it's half the amount that I had been taking. If you trust your doctor and the surgeon then I would keep an open mind and seriously consider it.

[Lynnie1 in reply to horsplay]

horsplay Did you have cognitive issues?

[Aleagles]

Thanks that is most encouraging news horsplay

[Merlofriend]

I have had to choose between my major tremor being controlled and my eyes clamping shut (as a form of dystonia) for approx 70% of the time, since having DBS.

[movinngroovin]

Saved my life-Pro

Weight of device in my chest-Con

[etterus]

I had it performed 2.5 years ago. I would probably be in a wheelchair today without it.

It's not a cure though. I still have a need for meds. I'm also living with a progressive disease. The motor symptoms are controlled better but the nonmotor symptoms are not helped at all.

Make sure that you have the best team available!!!

[llwwd in reply to etterus]

I agree with eeterus. If you were to ask if I am glad I did it though, I would have to say yes. When I go to the Drs. to have it checked and she turns off the DBS, I am so much worse with tremors than i am without it. The surgery is not painful. I didn't need any pain drugs. I had it done 1 1/2 yrs ago. Good Luck, and if you have any questions this is the place to come too. Lots of very helpful and good advice.

[andrewij]

I had the operation in Sep15, they have now discovered the right electrode was implanted in the wrong position. This has resulted in dyskenesia problems on the left side, because I am over-dosed on levedopa. The right side, because of the incorrect positioning needs as much medication as needed pre-operation. Also, as they are unsynchronised this is giving me balance problems. I am really hoping the surgeon can correct the situation i.e. reposition the right side electrode into the correct position, to give me the full benefit of the operation. i know people that have had DBS, and it has been really successful, that is what I am hoping for. I would say "go for it". I will provide an update when I know the way forward.

[JohnPepper]

Hi Aleagles. DBS is not 100% safe. They do have a low failure rate, but because the DBS does nothing to slow down the progression of Pd and because none of the Pd medications does anything to slow down the progression of Pd, then maybe you should be looking elsewhere for help.

Let me tell you my story and then you will see that there is something you can do to help you reverse some of the symptoms of Pd:

My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992, when my symptoms had slowly got worse and worse until I started to shuffle and the neurologist was able diagnose the Pd.

Because of severe back problems, I had been going to the gym every day, six days of the week, until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I decided to stop going to the gym.

Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now and live a 'normal' life, full of purpose!

You may think that you will not be able to do Fast Walking, but I have found that not to be true with many other patients. I go all over the world showing people how to walk properly, with only three exceptions among hundreds of seriously affected patients. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include yours.

View my website - reverseparkinsons.net and contact me from there.

I do not charge anything for what I do, other than if you want to read my full story.