DBS

[martinstevens1]

Anybody gone through DBS?

[Hikoi]

Martin,

DBS questions don't seem to attract a wide response. Not sure why. Maybe after DBS people have little need for a forum. That's hopeful!

All I know is it gets harder the older you are to get it done, its very good for tremor, on/off and dyskinesia. May affect voice.

I suggest you put DBS in the search box and you will find other posts over the past 5 years or more. Here is one, you will see related posts also come up on the right hand side.

healthunlocked.com/parkinso...

[Tfrk]

Yes. Dx 2008 at age 48. DBS in 2014. Procedure seems somewhat barbaric but was a breeze. Results extraordinary. Especially elimination of leg cramps and ankle dystonia which made early morning walking nearly impossible. Only wish is battery lasted longer (3-5 years) as replacement requires surgery and is expensive.

[Lisl in reply to Tfrk]

Yes, absolutely brilliant! I was desperately disabled by biphasic dyskinesias and severe dystonia. I was frequently left unable to walk and was becoming quite reclusive. That was 5 years ago.

The dyskinesias gradually returned, as did quite severe dystonia on one (my onset) side (causing a lot of pain in damaged joints). The other side is still really good (my case is a bit complicated). I was 55 and around 15 years down the PD track. Onset around 40 years old with two young children and a burgeoning career (haha! That didn't last).

The DBS also controlled severe leg tremors.

I would recommend having it if it is offered and you are low risk for the surgery. It tends to be offered to younger onset cases because of lower risk, the length of time living with disability, possible work and other opportunities still available, and family responsibilities.

In my experience GP is very good for tremor and STN for dystonia and rigidity.

[CplParkinson in reply to Lisl]

I've been with the disease since 2011, surgery for DBS in 2016. With 4 kids all under 7, 5, 3, 1 made my life much improved. Dystonia in legs and arms, severe enough at times to stick me in the fetal position in pain crying. I was 39 when diagnosed. Now I'm able to play with my kids and walk again. So thankful for it.

[Sleeplessparki]

Martin,

I’m actually having the procedure done June 11th........looking forward to getting some relief from this insidious disease.

[CplParkinson in reply to Sleeplessparki]

Do you know which kind of leads your having Medtronic or Vercise DBS by Boston scientific.

[Sleeplessparki in reply to CplParkinson]

Actually I’m going with the St Jude infinity device with directional leads and iOS compatibility with iPad and iPhone. It’s been around for a couple of years. I think it is better option than Medtronic model not sure how vercise stacks up.

[movinngroovin]

It saved my life! Love it!

[etterus]

I would do it again in a heartbeat....