Has DBS had a positive impact on your life? Which abilities did it give you back, if any?

[Daniel Novak]

DBS to the GPI location help me regain some functions in my lower legs. The improvement in gait allowed me to exercise harder for another 5 or 10 years. However, in theory, we end up the same but it sure helped the journey.

[Jon Busch]

A DBS surgeon once said to me “DBS isn’t all it’s cracked up to be.”  It makes this thread all the more interesting to me.

[Rob W]

DBS has helped me to keep exercising. Before DBS I would get dystonia in my leg that would cause it to twist whenever I ran or biked. And it got worse when I exercise harder. Knowing the effects of how exercise helped my symptoms improve it made DBS a no brainer for me. I had DBS in 2015 and since then I have been able to ride my bike and Jog without any dystonia and the fact that I also got off of about half of my meds also made it very beneficial. I had DBS placed in the STN.

[Teresa Masterani-Hicks]

I completed the DBS as of April 6, 2023!  The tremors are gone in my hand/arm which it also affected my right leg with dyskinesia which that is gone too!  I’m glad I had it done because I couldn’t stay still even with the meds! I was taking meds every three hours  before DBS which made me nauseous and even threw up on occasion!  Now I’m on 4 meds a day which is great for me now that the DBS takes care of everything else!  I feel better but I have to say my balance is better but not totally gone!  All in all it was the right thing to do for me!  I’m very glad I had it done!

[Ron Lusk]

DBS allows me to walk again.  I now have 3 leads in my brain.  The first 2 allow me to stand with balance and I can walk again.  They also control the termers in my left hand.   The third lead was added which helps the right hand.  The plus is more control on my right side, the negative is no MRI as that would fry my brain like a miocrowave.

[Marjorie Weiss]

My husband had surgery in 2007 for the left side of his brain and 2009 for the right side of his brain. It helped him control the tremors so that even all these years later they barely show up. The best thing for him was it took away the pain that he had from the stiffness. His neurologist once told a resident that he had had a remarkable response to DBS.

before the surgery medication did not help his tremor and terrible stiffness in his legs and arms at all. He was given the highest dose of CL that his neurologist had ever given a patient. It did not make a difference and the side effects were vast. Hence, the DBS surgery was an absolute lifesaver.

[Al]

In fact, DBS has saved my life. I’m back to normal functioning with no more tremors in either hand except under high-stress situation.

[J. Gottlob]

I had bi-lateral DBA in July of 2020.  I have since moved to another state for better health care.  my new neurologist questioned why- I had gotten it and that one of the  leads wasn’t located in the correct spot.  My old neurologist oversold the results.  My problems are gait and balance., which DBS doesn’t address  so I did not gain any super powers.

[Yvan Demers]

Tremblement et dyskinésies son disparu complètement. Depuis octobre 2022 j’ai subis l’opération DBS. J’ai réduit la médication de 70 %. Toutefois , mon équilibre et mon débit vocale est légèrement affecté. Je continue de travailler sur les ajustements avec mon neurologue pour retrouver mon équilibre d’avant l’opération. Je suis conscient qu’à 61 ans, je ne pourrai pas retrouvé mon énergie de 21 ans. Si je devais recommencer je le ferai à nouveau.

 

[Sveinn Áki Sverrisson]

DBS changed everything for me. Before surgery, I was off for a long time every day, and strangely especially on weekends. I now take 50% less levadopa.