30 patient evaluations for Deep Brain Stimulation

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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

Mar 15, 2010 (Started Apr 17, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Severe (for Overall) (mobility decreased)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: DBS is the new technology that alleviates all shaking and dykinesia and allow almost full body functionality. My DBS surgery is performed improperly. The leads were too close together, placed at a bad angle 35 degrees from the "floor" and the sutures were on top of the hardware
Cost: $200+ monthly
Side effects: mobility decreased

Mar 10, 2010 (Started Apr 17, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Severe (for Overall) (mobility decreased)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: Have DBS performed by a knowledgeable surgeon. It works!
Cost: $200+ monthly
Side effects: mobility decreased

Sep 14, 2008 (Started Apr 17, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall) (mobility decreased)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: The best solution for PDers.
Cost: $200+ monthly
Side effects: mobility decreased
  • 3 helpful marks

Nov 10, 2010 (Started Jun 19, 2009)

  • Effectiveness
    Major (for Improve mobility)
  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Moderate (for Overall) (loss of balance)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: increase mobility, no tremors at alll,filing beter
Cost: $200+ monthly
Side effects: loss of balance

Apr 14, 2010 (Started Jun 19, 2009)

  • Effectiveness
    Major (for Improve mobility)
  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Mild (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: every day i improve more, and i feel better and my motion is faster
Cost: $200+ monthly
Side effects: loss of balance

Feb 2, 2010 (Started Jun 19, 2009)

  • Effectiveness
    Major (for tremor(s))
  • Side effects
    Moderate (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Personally it was me very easy to make the decision since i had the opportunity to know a patient that had been already operated and my only question to him was it is that he had to be operate again and he told me that If without doubting it one minute. also i had the opportunity to know a youth from another social stratum to which they operated very recently for the epilepsy to the day that we saw each other and it was one of people that more push myself to operate me. Regarding other benefits I consider that the benefit is to have recovered the initiative of finishing quick very fast anything that I start. What also produces certain frustration for what the last 10 years of my illness I cannot recover it in 6 months
Cost: $200+ monthly
Side effects: loss of balance
  • 3 helpful marks

Oct 27, 2012 (Started May 10, 2011)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Moderate (for Overall) (headaches, uncomfortable)
  • 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

Nov 18, 2008 (Started )

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: I recommend everyone who has PD to at least be evaluated by a neurologist and neurosurgeon to see if they are candidates.

Nov 17, 2008 (Started )

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: I recently had DBS in Denver, it was the best decision concerning my health I have ever made. I can now walk, my tremors are essentially gone, I now have my balance, and do not fall any more.
  • 2 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

Jan 9, 2009 (Started May 15, 2005)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage:
Advice & Tips: Allowed me to reduce my sinemet dosage 80%, eliminated agonist and amantadine, since have restarted to reduce sinemet even further. My balance and speech has declined but cannot say whether due to DBS or progession of disease as it's been 24 years since diagnosis.
  • 2 helpful marks

Oct 31, 2008 (Started Oct 31, 2008)

  • Effectiveness
    Moderate (for depressed mood)
  • Side effects
    Mild (for Overall) (speech problems, visual disturbances (ie seeing stars and light flashes))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Advice & Tips: This is still experimental. Patients must be able to recall a time free from depression, even decades ago. The surgery was very painful, and took longer to recover than I expected. Once I did, the results were apparent. Not so much for the depressed thinking, but completely eliminated the slowed thinking, lack of verbal fluency, eyesight much improved (details, colors), hearing improved-able to follow conversations, fine motor skills definitely improved. I would choose ECT over this surgery for depression if insurance would pay indefinitely. This is more an option for people who need continued ECT once a month. It doesn't replace drugs, but seems to make them more effective. The drugs seems to help more with the hopelessness, sad thinking. The implant more with the slowed down stuff.
Side effects: tingling near implant, mild pulling sensation in my neck from the wire threaded under the skin, visual disturbances (ie seeing stars and light flashes), speech problems
  • 2 helpful marks

Dec 21, 2010 (Started Oct 08, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for tremor(s))
  • Side effects
    Mild (for Overall) (excess saliva, problems with focusing eyes, dependent on doctor)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Monthly
Advice & Tips: no problem at all EVERY THING ; TREMORS; PHISICAL ; THINKING WORKING:DRIVING I AM FREE AGAIN 100%
Cost: $200+ monthly
Side effects: problems with focusing eyes, excess saliva, dependent on doctor

Feb 16, 2010 (Started Oct 08, 2008)

  • Effectiveness
    Major (for Parkinson's disease)
  • Effectiveness
    Major (for tremor(s))
  • Side effects
    Mild (for Overall) (excess saliva, dependent on doctor)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Monthly
Advice & Tips: I have all ready explain this, i am more or absoluty streight, much more alert , less depresion,i am working in nano technologic and electronic, i have already practicing golf again, reading much more. beter position and beter balance out side off home i don´t know wy probabily because i tray harder. and my steps are more longer and slower. The impact was all ,to my family and me i am a more hapier person i have a new pet that it is a cokerspaniel blcak who i take hin out every day to play at a park
Cost: $200+ monthly
Side effects: problems with focusing eyes, excess saliva, dependent on doctor
  • 1 helpful mark

Feb 1, 2006 (Started Feb 01, 2006)

  • Effectiveness
    Major (for Parkinson's disease)
  • Side effects
    Moderate (for Overall) (memory loss)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: All the time (24/7)
Advice & Tips: If you are considering DBS as and option, you can always leave me a message with any questions you may have. It is a tough decision to make. A very individual and personal decision. I am very fortunate to have been a good candidate for the surgery and it has proved to be a good decision on my part. But it does come with some risks as well as its benefits. My PD is much more manageable now than it was a few years ago because of the DBS along with some medication changes.
Cost: < $25 monthly
Side effects: memory loss
  • 1 helpful mark
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