To Anyone Who has Undergone DBS

[faydee]

How long did your programming take until you felt as if you were feeling that it was worthwhile . How often were you programmed ?

[compucure]

I had DBS in 2011. I reckon it took around 6-8 months to get the programming sorted. Tony

[faydee in reply to compucure]

Thanks Tony , actually this comment is in relation to my husband.. He had DBS in September and is really going backwards . On meds before DBS gait was good now dreadful . Suffering falls ( and Injuries ) but had never fallen prior to DBS. How often were you monitored / programmed ?

[compucure in reply to faydee]

I was monitored at monthly intervals at first and now I am monitored at six monthly intervals. Just a thought - what settings are on the stimulator? Tony

[faydee in reply to compucure]

Hi Tony , thanks for your reply , at the last vist my husbands setting were set by his specialist in a rehab hospital & we were asked not to move them so not sure . Because he has so much twisting / wriggling plus now and them left leg tremor, he has now torn a ligament in his hip !!! Where were you programmed ?

[goose63058]

I had it two years ago.I can't drive, walk without a walker. i freeze up, I am deterierating fast. I;m going to speech therapy to learn how to speek loudly and clealy. I go to the dr, about once a month If i had to do it all over again, I wouldn't.

[faydee in reply to goose63058]

I'm so sorry , sounds like my husband has gone down the same track . What were you like prior to DBS ? How long had you had Parkinson's ? Where were you programmed?

[goose63058 in reply to faydee]

I was diagnosed2007. pre DBS I drove,did everything unaided,spoke loudly ect.. Ithink I have had PD for about 5 years.

[Jbcourcy]

I had DBS in April 2012. Programming just now getting it right. I still have occasional off periods but far less often and I have begun to cut back on two of my meds and the span between doses has stretched to almost 4 hours on a good day.

[fishwife]

I'm in the midst of it. It's a very confusing process. I had surgery in July, 2012. Still trying to figure out best settings. I get frustrated sometimes, and my husband reminds me of how bad things were before the surgery, and I realize it was all worth it.

[debbie66]

my husband had DBS in 2004 he was switched on immediately and the results were fantastic.He suffered from dyskinesia 24/7 and after the DBS it was non-existent. He had to go back twice in about a month to have his settings sorted and he was great.

He does suffer with falls and speech problems but he says he would do it all again as it gave him some of his life back .He has check ups about every 6 months .He has had 2 battery changes since then and it is a quick procedure.

His meds were down to about a third of what he was taking,over the last year he has had to have some extra tablets to take but considering what he is like now to what he could have been like without the DBS my husband says DBS wins hands down every time.

[Thumbpick]

I had DBS in 9/2010... and it gave me my life back. Before DBS, I was shaking so hard I couldn’t button buttons, tie shoes, carry a beverage two feet w/o sloshing it all over the floor, eat a sandwich w/o the contents flying out all over me, the floor, table, etc. My low point came when I went out to dinner w/a friend and couldn’t keep food on the utensils… food was going everywhere but in my mouth. It wound up that my friend had to cut up my food and feed me. She was very kind and matter-of-fact about it, but it was one of the most humiliating events of my life… maybe the most. I became a recluse after that, only leaving my house to go to dr. appts, grocery shopping– only things absolutely necessary.

And now? I have some speech slurring and occasional tremors on the right side. Some days I do get frustrated with it all, but then I think back to how I was before. For me, I get DBS adjusted about every 6 mos. I have to constantly remind myself that PD is progressive, and while the controller does a great job, the PD is always there in the background... progressing. Hence the need for periodic reprogramming.

[jonroberts]

I had DBS in June, 2012. I've had the generator adjusted 3x. Next appointment is Dec 14 in Albuquerque. I need some tweaking on the IG. My best time is in the mornings. I start to wind down around 4pm. I've cut down on meds since DBS. It has curtailed dysekensia and involuntary movements. Still have off times but not as severe as pre DBS. I'm much better with surgery. Went to a college basketball game last night. Had some off time but enjoyed the game even though we lost, New Mexico State to UTEP, 55-54. I would not be able to attend sporting events without DBS. Feel free to contact me.

[hardtop03]

I had DBS in 01/2012, and it's made a big difference. Before DBS, I would shake and freeze uncontrolablly. I would only leave my house to go to the Dr., grocery store, etc., only places that wer absolutely necessary.

After DBS? I have started to slur my speech and slight tremors on the right side. And still some days I get frustrated with it all, but its better than it was was before. I get DBS adjusted about every month. I'm on the patch now and that helps alot.

I'm coming up on my 1 year anniversary, and I'm even back in the gym!

Don't let it get you!

[littleoldasianlady]

I had DBS on 8/13/12 my tremor and the rigidity are barely noticeable from day one. And it's true that my speech are worst. I had the adjustment every month for three month and I'm on the appointment is in three month. For medications, we terminate the amantadine and the requip

[Barbie18]

I AM NEW TO PD ,SO I WOULD LIKE TO KNOW WHAT D B S IS I HAVE READ ALL THECOMENTS BELOW AND I AM INTRIGUD TO WHAT IT IS

[etterus in reply to Barbie18]

DBS deep brain stimulation. A surgical procedure that implants an electrical device that produces impulses to control tremors,rigidity, etc.

[krpnova]

I guess I am the lucky one. I had DBS surgery in april 2011. The programming took a couple of weeks to get right. Medtronic rep gave me control over my settings. Not just a choice between three settings, but the ability to change the actual setting. I also attended a seminar in Florida where I learned how to use the programmer and what the different groups would do. I am very lucky to have such a great relief from the awful tremors. I don't have any "freeze" . I am willing to talk to anyone that needs to hear about my DBS. You can call me [phone] or email me at [e-mail]

[Jash]

My DBS was June 2012. Overall, the improvement has been remarkable. I live more normally now-- button my shirt, zip my jacket, tie my shoes, eat in public and exercise at a public gym without feeling like the old guy( although I am 77). self esteem improves too when you dont feel like everyone is looking at you. After 5 months now, I ready to say I'd do it again. In the beginning, I had freezing episodes I'd never had before; I'd fall and that had never happened before. I still have some hand tremors, although they are far less than before. We've now ramped up my programmer visits to every two weeks because I have a low tolerance to voltage--which means we go slow-- very slowly. My speech is a little " thick" and I'm more aware of balance issues now. My gyroscope tips a little when I turn too suddenly. I am also on 4mg Neupro patch. Good luck and don't lose heart.

[Sadiesadie]

I had DBS in Sept 2004, and May 2005 (long story for another time). It took two weeks for the doctors to "turn me on" but it has made an amazing difference in my life!!! I do yoga and pilates, have been to Bali once and am going again in Feb 2013. It was a decision that I have to this day never regretted!!. I also am willing to talk to anyone who is considering DBS, email me at [e-mail] and my cell number is 843-303-1357.

[Joealt]

The book "Deep In The Brain" by Helmut Dubiel, a philosophy professor who struggled with his attempt to hide his PD for fear of losing his teaching position, frankly discusses his experiences with deep brain stimulation and after effects in The Creature we call I.