24 patient evaluations for Deep Brain Stimulation with a adherence rating of Always

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Oct 30, 2017 (Started Feb 01, 2010)

  • Effectiveness
    Major (for on to off fluctuations worsening)
  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Daily
Advice & Tips: My DBS operation was in 2010 at the University of Cincinnati Hospital, Dr. Mandybur with the Mayfield Clinic. DBS is critical for me to live a more normal life!! When I have experienced my DBS being turned off, I can't hardly move, my face becomes a mask, I feel terrible, can't dress my self, etc. If you have had PD for 7 years, I recommend that you definitely should check if you are a candidate for the procedure!! Update: I now go to 7 hours of PD specific exercise classes including 3 hours per week at Rock Steady Boxing for conditioning, weight training and boxing. Exercise is the new medicine for Parkinson's. If you are not involved, get moving. The more we sit around the worse our symptoms will be.

Mar 31, 2016 (Started Feb 01, 2010)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for on to off fluctuations worsening)
  • Side effects
    Mild (slurred speech)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily

Dec 15, 2015 (Started Feb 01, 2010)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for on to off fluctuations worsening)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: DBS is critical for me to live a more normal life!! When I have experienced my DBS being turned off, I can't hardly move, my face becomes a mask, I feel terrible, can't dress my self, etc.   If you have had PD for 4-5 years, I recommend that you definitely should check if you are a candidate for the procedure!!

  • 2 helpful marks

May 20, 2017 (Started Jan 15, 2016)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I am sure most people that are contemplating DBS have seen "YouTube" videos on the subject. I watched part of one today and it was totally different than what I experienced as far as the actually surgery was concerned. However, the outcome was just as amazing. Like I have said before, it is not a cure, but it has improved my quality of life tremendously and also helped with the ole pocketbook due to a major decrease in meds.

  • 0 helpful marks

Apr 15, 2017 (Started Dec 15, 2016)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (walking slower, balance problems)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: My balance is a little worse than before; I walk a little slower than my best on days; my speech is actually a little better than before. See https://www.patientslikeme.com/forum/pd/topics/147582?page=1&post_id=2369462#post-2369462 for details. My out of pocket costs were around a thousand dollars. The total cost (most of which was paid by medicare) was about $150,000!
Cost: < $25 monthly

  • 1 helpful mark

Jun 8, 2016 (Started Feb 11, 2014)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: The current voltage settings on my neuro-stimulator are 3.5volts on my right side and 2.4volts on left side. These settings can be adjusted as needed by using my neuro-stimulator However, these settings have not been changed in several months as there has not been a need to change these. DBS helps with tremor but not with balance.
Cost: < $25 monthly

  • 0 helpful marks

May 27, 2016 (Started May 06, 2013)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Be sure to ask lots of questions and make sure your neuro surgeon has done a number of DBS surgeries. Ask for references

  • 0 helpful marks

Nov 8, 2015 (Started Aug 26, 2013)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 other Daily
Cost: < $25 monthly

Sep 27, 2013 (Started Aug 26, 2013)

  • Effectiveness
    Moderate (for Parkinson's disease)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 other Daily
Advice & Tips: Still balancing meds. I have about 3 hrs on time and 3 hrs off presently when meds wear off.
Cost: < $25 monthly

  • 0 helpful marks

Oct 27, 2012 (Started May 10, 2011)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Moderate (uncomfortable, headaches)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: DO IT!!! Find an excellent Movement Disorder Specialist go through all the evaluation process and get the implants. It will change your life. Very little and mostly no shaking any more. I am completely off the medications (I insisted). I can now sleep again (that is the best benefit) although my body is still trying to catch up for all the nights that I only got 2~3 hours sleep.

  • 3 helpful marks

May 5, 2012 (Started Jul 01, 2015)

  • Effectiveness
    Moderate (for Parkinson's disease)
  • Side effects
    Moderate (jerky movements (dyskinesia))
  • Adherence
    Always
  • Burden
    A little hard to take
Cost: < $25 monthly

  • 0 helpful marks

Jan 12, 2012 (Started Jun 28, 2010)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for dystonia)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: My DBS Neurostimulator FINALLY kicked in after close to one year of monthly programming visits to the DBS clinic at Robert Wood Johnson medical center. I am doing MUCH better now. I have not reduced my meds but that's OK. It has brought me back to life and some days I almost feel like my old self.
Cost: $25-49 monthly
Side effects: dizziness, neck and shoulder muscle soreness

Nov 18, 2010 (Started Jun 28, 2010)

  • Effectiveness
    Can’t tell (for dystonia)
  • Effectiveness
    Can’t tell (for Parkinson's disease)
  • Side effects
    Mild (neck and shoulder muscle soreness, dizziness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: AS OF 11/2010: Right now I am in the middle of programming sessions for the IPG battery in my chest. I go once a month to a "DBS clinic" Robert Wood Johnsohn Medical Center in New Brunswick NJ, USA. I see the DBS programmer and a neurologist. Even though I only have PD on my left side, it is quite severe. Unfortunately, the neuro has INCREASED my meds and the DBS programming has been very very slow - each time I get the voltage increased the PD seems to "compensate" It has been 5 months since the surgery and so far the benefits have been minimal. One unexpected positive effect has been reduced sense of bladder urgency. The surgery itself was not bad since they only had to install the wire lead on the right side of my brain.
Side effects: dizziness, neck and shoulder muscle soreness

  • 1 helpful mark

May 17, 2011 (Started May 17, 2011)

  • Effectiveness
    Can’t tell (for Parkinson's disease)
  • Side effects
    Moderate
  • Adherence
    Always
  • Burden
    Very hard to take
Dosage: One time
Advice & Tips: Still take meds q 2hrs--must increase volts slowly over time to improove this ; one month later, meds still the same. I'm nauseated --is this related?
Cost: < $25 monthly
Side effects: word fishing

  • 0 helpful marks
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