30 patient evaluations for Deep Brain Stimulation

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Jul 6, 2020 (Started Feb 25, 2009)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (fear of embarrassment)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: All the time (24/7)

Jun 16, 2009 (Started Feb 25, 2009)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Sometimes
  • Burden
    A little hard to take
Dosage: All the time (24/7)
Advice & Tips: Just go for it. you've got to be desperate to let a surgeon drill holes in your head and i was. I've had 10 years of quality life.
  • 0 helpful marks

Apr 24, 2020 (Started Feb 22, 2019)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (stutter step, soft voice, weight gain)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Boston-Scientific (current-controlled) is best DBS manufacturer, Soft voice is a minor problem. Stutter steps happen when I have not set current high enough.
Cost: $200+ monthly

Jan 22, 2020 (Started Feb 22, 2019)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (stutter step, soft voice, weight gain)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: Daily
Advice & Tips: Complete cessation of tremour; no more dyskinesia, no bradykinesia; WOW!!
Cost: $200+ monthly

Oct 28, 2019 (Started Feb 22, 2019)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: If you are in good physical and mental condition, insist on vanning DBS. For me, it has turned the clock back years! Up front cost was $120,000 US.
Cost: $200+ monthly
  • 0 helpful marks

Jun 12, 2018 (Started Apr 10, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: My mood improved with my confidence and improved abilities
Cost: < $25 monthly
Side effects: depressed mood

Feb 18, 2009 (Started Apr 10, 2008)

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

Jan 11, 2009 (Started Apr 10, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: ask lots of questions and do lots of research before the procedure and know your doctors,make sure they know you well
Cost: < $25 monthly
Side effects: depressed mood

Nov 9, 2008 (Started Apr 10, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (depressed mood)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Huge mobility improvements and overall increased self sufficiency
Cost: < $25 monthly
Side effects: depressed mood
  • 1 helpful mark

Oct 30, 2017 (Started Feb 01, 2010)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for on to off fluctuations worsening)
  • Side effects
    None (for Overall)
  • 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 on to off fluctuations worsening)
  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (slurred speech)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily

Dec 15, 2015 (Started Feb 01, 2010)

  • Effectiveness
    Major (for on to off fluctuations worsening)
  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • 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!!

Feb 10, 2010 (Started Feb 01, 2010)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    None (for on to off fluctuations worsening)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Daily
Advice & Tips: Ditto all the above. On April 3rd I need to get my rechargeable Medtronic battery changed after 8 years. The replacement is the same battery that I have had, so the same setting can be used. The rechargeable battery has been great. If I had the regular non-rechargeable battery I probably would have had 4 battery replacements during the last 8 years since I am at a fairly high electric level. I thank God that I have had DBS, it has been life giving for me!! DBS won't be effective or approved but if you have had PD for 3-8 years you should look into it.
  • 3 helpful marks

Apr 15, 2017 (Started Dec 15, 2016)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (balance problems, slower gait)
  • 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
  • 2 helpful marks

May 20, 2017 (Started Jan 15, 2016)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall)
  • 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.
  • 1 helpful mark

May 8, 2017 (Started Feb 21, 2017)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for slow movement (bradykinesia))
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Be patient
  • 1 helpful mark

Jun 8, 2016 (Started Feb 11, 2014)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • 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 (for Overall)
  • 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
  • 1 helpful mark

Nov 8, 2015 (Started Aug 26, 2013)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • 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 (for Overall)
  • 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
  • 1 helpful mark
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