DBS Surgery

[jebbers]

Had DBS in July this year. Seen Dr. twice for tweaking of the electrical currant. So far it seems to be a trade off of symptoms. Controls tremors (a blessing) but now having trouble walking, some slurred speech, ridigity. All of these were in the backgroud and minimal before. Also having trouble coordinating movements, (typing etc). Any input from you all would be appreciated.

[jillannf6]

hj jebber

sounds a s if you have some of the symptoms which i have ( I hAVE PSP NOT PAFKINSONS)

BUT TEGHE SPEECH SLURRING AND QUIIET ER VOICE. / BALANCE PROBS /COORDINATION PROBS RE DOINVG ANYTHING. /FREEZING WHILST WALKING/ ETC ETC ARE all part of my provelsm with others as well

lol Jill

[Merlofriend]

My experience exactly, although my first device by Medatronic was removed after developing infection 3 months later, replaced by more sophisticated device from Boston Scientific. My tweaking is done by a specialist nurse (in UK), with the Dr only involved when one of the symptoms, blepharospasm, has become of greater importance, so I am due to have a total review involving everyone next week. There is little doubt in my mind that trade off is the phrase most appropriate. Also of impotance is the skills of the person who does the tweaking.

[Jash]

I had the same experience. It's ben 28 months now and the sometimes freezing or falling, when I had none of that pre dBS, has not gone away. I know I'm not the only one. Surgeon said that happens to some people. The first year of tweaking is very important. The programming will help some. Falling and slowing cognition are now my dominant Parkinsons conditions. I have no tremor-- quite minor once in a while. Overall, my quality of life is better without the out of control tremors I once had. Best to you. I hope programming will be the answer for you. Don't be alarmed. It does happen. I was shocked because I'd never fallen pre DBS.

[Kadie57]

You should not settle for this, you need to be on a weekly schedule of tweaking until they get the adjustments correct. To have only a trade - off of symptoms is not acceptable . YOU had a major surgery, they received a huge amount of money for and you must settle for something less the you need to live with PD. Talk to your Neur or whom ever does the adjustments. NO one can do this for you, IT IS UP TO YOU to be your own spoke person. Let us know how you do. Take care, better days ahead, what is exciting is when they do get everything adjusted you'll feel so good.

[Hikoi]

Unfotunately DBS is not a perfect solution. Speech problems and balance problems and cognitive problems are all know to become worse in some people after DBS, and some of this depends which area of the brain the DBS targets. (I would hope that people are told about this before they have surgery!) . Do hope adjustments help you significantly.

[SusanF]

From my husband's experience, it took several months to figure out the correct settings and balance these with the correct dosage for his medications. Please continue to go back to the dr for tweaking. It truly is a remarkable advance in treatment given the proper time. At first , my husband kept messing with the settings on his own remote to tweak it and the dr. took took it away from him for a short while. I'm so glad you had the surgery!

[LauraL]

You aren't "tweeked" right yet. I had DBS surgery in Jan '11 which totally eliminated the tremor in my right hand. I would insist that they keep trying or I would go to a different programer. It sounds to me like your settings are too high.

[ancee]

I had dbs last March. So far, there hasn't been much improvement. I am dealing with dystonia--we are just beginning to see some improvement, but it is minimal. Has anyone had any experience with the Movement and Neuro-something center in Englewood C0. (USA)?