All posts by Sierra Farris

Most recent publication – Rapid Assessment of Gait and Speech

Surgical Neurology International

Sierra M. Farris, Monique L. Giroux

August 2, 2016

Rapid Assessment of Gait and Speech after Subthalamic DBS

Background: Describe a rapid assessment for patients with idiopathic Parkinson’s disease (PD) and deep brain stimulation of the subthalamic nucleus reporting worsening speech and/or gait problems.

Methods: We retrospectively reviewed 29 patients that had improvement in gait and/or speech within 30 min after turning stimulation off. Clinical data analyzed include unified PD rating scale motor scores and stimulation parameters before and after adjusting stimulation. All patients received electrode efficacy and side effect threshold testing. Stimulation parameters were adjusted to maximize efficacy, avoid side effects, and maximize battery longevity.

Results: Turning stimulation off revealed reversible speech and/or gait stimulation side effects within 30 min. Focusing on six factors revealed stimulation modifications that improved motor symptoms, eliminated stimulation side effects, and reduced battery drain. Primary stimulation parameters modified were cathode selection and pulse width reduction.

Conclusions: Stimulation-induced side effects impacting gait and speech can be identified within 30 min. A systematic evaluation can distinguish disease progression from reversible stimulation side effects and improve motor outcomes over the long term.

Publication is open access. Link.

My Story #5 Balance better OFF stimulation

Thank you for submitting your story.

My Story: I had a bilateral DBS in 2014. My 1st programming June of that year, tremors = no more. yeah!! Starting early this year I was falling A LOT, at least 60 times from January to June. Multiple admissions multiple ER visits. About end April the following year I asked my family doctor about 2nd opinion. I also was having  lot of headaches, CT showed nothing, EEG nothing. So I went somewhere else and they listened to how things happened. He didn’t tell me what he was doing and eventually turned my stimulator off. Dopamine was still there but I could walk. Closed my eyes and walked down hallway. No falling. I was amazed. Story to be continued, having an MRI tomorrow!!

Programmer Commentary:

Brain MRI can be a helpful tool when assessing worsening symptoms after DBS.

My Story #4 Freezing is new after DBS

Thank you for submitting your story. Your story is not uncommon and is one of the most frustrating situations after DBS.

My Story: I had DBS (STN bilateral) in 2014. Worked great for my tremors, even internal tremor. However, my walking and balance is terrible. I am battling freezing up a lot and have had many falls. This never happened before the surgery. They would shut the stimulation off and the freezing would stop. They have tried many settings including low frequency, cycling and tried different medications. The strange thing is a few settings worked for a month or a little longer and then stopped. While they are working I feel great, almost forget I have Parkinson’s. None of the doctors have an answer for why this happens. I am now on my third neurologist and losing hope.

Programmer Commentary:

Gait freezing is a highly disabling symptom requiring a thorough evaluation and three questions should be answered.

  1. When assessing gait freezing after DBS, the first question generally asked is whether the freezing responds to medications. Sometimes DBS is so effective for symptoms such as tremor, medications are significantly reduced.  Medication reduction can unmask or cause other symptoms such as gait freezing to emerge.
  2. If freezing improves with a change in stimulation settings, there may still be hope that freezing can improve if optimal settings have not yet been determined.
  3. Overstimulation can also cause freezing. If tremor is the goal, sometimes stimulation parameters are too intense and cause side effects. Freezing can be a stimulation side effect. If this is the case, gait should become the only goal to deduce the optimal settings. I find if other symptoms are optimized, tremor suppression will follow.

Symptoms are Worse After DBS – Advocating for better care.

Since I created this blog in May 2013, the most common search that brings someone to the blog include speech and walking problems. My August 2013 post titled “Walking and balance is worse after DBS, What can be done” has been read over 2,000 times. Speech and balance problems also reflect the most common concerns from patients that have requested a second opinion for our DBS troubleshooting clinic.

Over the past 12 years, we have evaluated over 350 people seeking a second opinion about poor results. Patients arrive with the hope we will find a solution and feel the second or third opinion is their last hope. Investigating problems takes time and patience with a methodical approach. Insurance payers do not reimburse extended clinical assessments so the extra time is generally at our willingness to work pro bono. Most often, the ‘fix’ is a simple change in stimulation settings. Sometimes the placement of the probes in the brain could be better, and sometimes, the problem is disease progression. Broken wires and device malfunction have become less common over the past decade. Managing stimulation appropriately remains a predominate cause of poor results, even after all the years DBS has been FDA approved (1997).

Not all communities will have medical specialists to help when results are disappointing and professional politics or egos may limit referrals for second opinions. The majority of our calls for a second opinion are from patients or family members seeking out help on their own. So where can a patient turn for help when symptoms do not improve as expected or the results do not match the proposed benefits of DBS?  My Story #3 was submitted by a person experiencing worsening speech and gait problems after DBS. I could read in her words a palpable distress of lost hope. Thus my purpose in writing this post is not to increase my pro bono time but to shed light on a persistent problem for patients with DBS that have nowhere to turn.

As medical providers, we should not underestimate the negative impact , the loss and the persistent distress when DBS falls short of the promise that life will get better. When DBS fails the patient, the cause should be identified and quality improvement should be implemented to raise the bar of care for patients with DBS. We owe our patients the level of care they deserve when undergoing the risk of an elective brain procedure. We have an ethical responsibility to not engage in offering DBS to patients when neurological, surgical and/or programming skills are limited. 

I am often asked how to find a qualified DBS programmer and many of the patients seen for troubleshooting leave with an anxiety of what will happen when they return home. Unfortunately, there is no registry, certification or qualification for DBS programmers. The credentials vary and level of education nor years of experience guarantee competence in DBS. Stimulation may even be managed by device industry and non-medical personnel. This has been an ongoing issue since DBS was FDA approved and remains a quandary for patients, training programs and the healthcare system.

We are only seeing the tip of the iceberg as DBS is mentioned in the media as a hope for Alzheimer’s, Autism, stoke and depression as well as several other serious debilitating conditions. When time, research, medical training, experience and increasing volumes of implants have not led to a proficiency examination nor standard of care policy for DBS, the true benefits of deep brain stimulation will remain elusive for many patients and the number of poor outcomes is destined to grow.

My Story #3 – Speech & Gait Problems – What can be done?

My Story posts are edited to protect the senders identify. This months submission is a common story we hear from patients seeking a second opinion.

My Story: I am 60 years old now. I had left and right DBS done in 2012. My tremor and stiffness are gone, but my speech is very hard to understand and my balance and gait are getting so bad that when I walk, I start to walk slowly then after walking few steps, I start racing and cannot stop. I noticed that I am getting worse day by day and after I leave the Dr’s office, this happen slowly over time.

Every time I go to the doctor she increases the stimulation and my condition gets worse. I have speech problems and also balance problems. I have had multiple falls. I really do not know what to do. If I increase the stimulation this will happen and if lower it, I will start the tremors and I get tired easily. I really do not know what to do.

My Story #2 “Celebrating Life”

My Story submitted by D.D.

At thirty nine I was diagnosed as having young onset Parkinson’s, a disease which had affected my maternal grandfather much later in life. What began as a slight twitch in my thumb quickly progressed to a tremor that severely affected the left side of my body.Within two years of my first visit I was prescribed Levodopa- considered “the gold standard’ of all PD meds. Levodopa is a powerful anecdote that; unfortunately over time, presents horrifying side effects called dyskinesia, or involuntary muscle movements. As with most meds, over time the benefits of Levodopa are reduced.

After closely monitoring a positive reaction that Levodopa was a benefit, my Neurologist; Dr. Stacy Horn, considered me a candidate for Deep Brain Stimulation (DBS.) I underwent the eight hour surgery in July, 2008. For six of the eight hours I was awake and very much involved. I was speaking to the Surgeon nearly the entire time which helped ensure that he was making progress. An MRI of my brain was utilized to give my Neurosurgeon; Dr. Gordon Baltuch, the specific location of my subthalmic nucleus. Two nickel-sized holes were cut out of my skull and two probes were implanted. Essentially these probes powered by a small device; the size of a Tic-Tac box, implanted just under the skin on the right side of my chest eliminate the “static” caused by the lack of dopamine. I returned to work about four weeks after surgery.

I was provided a small remote which monitors the battery level of the stimulator. I may also self-adjust my stimulator with this device. My tremor has completely subsided. Other symptoms; bradykinesia and dystonia are minimized between the delicate balance of a “cocktail” of prescriptions and adjustments to my device by my Neurologist.

DBS is not a cure for PD, nor does it slow the progression of all symptoms. Depending on your particular settings, the battery life in the stimulator lasts between 3-5 years. It is changed in a fifteen minute outpatient procedure by a Neurological Surgeon. DBS has completely eliminated my tremor. My gait has improved as well. In a celebration of my independence and life my brother Joe and I recently went skydiving!

My Story #1 – Considering DBS and PC+S

My Parkinson’s diagnosis came in October 2004. In the 11 plus years since that day, I have gone from a light tremor in my left arm and muscle stiffness, to loss of fine motor control in my left hand, and increased stiffness (I never was a good dance at any rate), balance issues , etc. A major issue is managing medications and their respective side-effects vs symptom relief. I am here because I am looking for unbiased, current state-of-the- art information on all aspects DBS. My neurologist is heavily promoting the DBS option for me. I am not convinced that it is what I should do. I am looking for an update on Medtronic ACTIVA PC+System. Finally, this site by Sierra Farris is by far the best I have found on the internet. (author anonymous) 

Thank you for sharing your story and kind remarks. Considering DBS is not a light undertaking for any person and deserves the thoughtfulness that you are investing in finding the best fit for you.

The PC+S is the latest advancement in DBS pulse generator technology from Medtronic and was made available to a few DBS centers in the USA for research. Our neurosurgeon has an ongoing research trial involving the PC+S and as well as other DBS centers across the US (see link below). The PC+S offers insight into brain activity with capability of sensing and recording brain signals that is not possible with earlier pulse generator models. The most common question I am asked from patients is about enhanced benefit from the PC+S. The PC+S does not offer the patient any improved benefit over other Medtronic Activa devices and does not offer less risks for side effects. The PC+S hopes to advance understanding of brain activity to build better devices that deliver dynamic instead of passive therapy. I included a very good review by Dr. Starr, link below. Wishing you the best in your search.

Medtronic announcement link

DBS PC+S Research List

Research Explained by Dr. Starr

Top Ten Posts of all Time – What can we learn?

Top Posts of 2015The most viewed posts over the past 2.5 years reflect common internet search inquiries that reached my blog from people living with or interested in deep brain stimulation from around the world. Deep brain stimulation therapies are growing at a rapid rate since FDA approved tremor in 1997. The therapy has improved the lives of people living with Parkinson’s, tremor, dystonia, epilepsy, Obsessive Compulsive Disorder and has improved symptoms in patients suffering from Multiple Sclerosis, Depression, Tourette’s, addiction, Chronic Pain and Minimally Conscious State. This year, DBS research has broadened the scope to include migraine, eating disorders and stroke recovery. (Author’s experience)

The internet provides a window into the interest in DBS world-wide due to the  ease of browsing search engines. Over 50 countries as large as China and small as Oman have visited my DBS Insights blog. The most frequent visitors of 2015 include the USA, China, Ukraine, France and the UK. Since May 2013, I have posted 60 pages of technical and Op Ed reports about deep brain stimulation reaching over 36,000 new users and now averaging over 2000 visitors per month.

Recapping the most commonly viewed posts on my blog provide an insight into the questions or concerns that people are searching for on the internet.  The top posts of all time include:

  1. Walking and balance is worse after DBS, what can be done? (8-22-13)
  2. ERI message on your programmer, what does it mean? (7-1-13)
  3. Fine tuning stimulation settings. (9-27-14)
  4. Stimulation side effects. (11-23-13)
  5. A journey of hope. (6-8-14)
  6. Troubleshooting problems.
  7. Top ten benefits of DBS. (3-28-15)
  8. Tracking your DBS battery life. (6-15-14)
  9. Technology Advancements in DBS. (5-25-15)
  10. DBS Alerts-Informing others about your implanted device (7-29-13)

The top viewed posts reflect some of the more commonly asked questions during early discussions in the clinic about DBS such as the benefits and side effects of stimulation. Others reflect a need for more patient education about the device and how to manage when problems arise during programming. Notably, the number one post that remains the highest search term for inquiry to this blog and my troubleshooting clinic is walking and balance problems that occur after DBS surgery. My first post of 2016 will be devoted to an extensive update on walking and balance problems before and after DBS and additional 2016 posts will update some of the other top ten noted above.

If I have seen you for troubleshooting, if interested, please submit your story for a future blog post. See submit your story tab.

As 2015 comes to a close, I wish all my readers and visitors a peaceful and rewarding New Year.

Sierra

From My Troubleshooting Files – Odd Sensations

Case Study (from my troubleshooting files)

A new patient was seen for a second opinion about a funny sensation on their scalp and occasional tingling, heat sensation and minor shock-like sensation in the neck.  The person had been having the sensations for about 6 months and told several times by their programmer that nothing was wrong and to ignore the sensations. On review of the history, the person had DBS for about 6 years and had experienced a very good outcome. Lately, tremor had been showing up in the hand occasionally and when the tremor came on it was quite bothersome and then would go away. Medications and general health was unchanged over the past year. There was one wedding and one funeral, but no undue stressors that persisted. No falls, no new hobbies and the Parkinson’s was otherwise stable. The stimulation had not been changed over the past year and the electrical checks were reported to be normal.

During the exam, the person did not have tremor and the stimulation appeared to be working properly. Touching the wires gently did not reproduce any shocks. The skin over the wires and battery was well healed. The electrical system check was normal. The person also appeared to be taking adequate medication. Based on the patient’s reports of odd sensations and occasional breakthrough tremor, I ordered a complete set of x-rays to examine the wires.

dBSblog
Skull X-Ray

The x-ray was conclusive. The wire insulation was damaged and needed replacement surgery.

The main learning points from this case example is the patient knew something was wrong. Following the historical information can solve most DBS problems in one or two appointments. The odd sensations were very near the damaged wire and a simple x-ray revealed the problem. The wire was not completely broken so stimulation could still travel down the wire, but some of the electrical current could leak out into the tissue and cause tingling, heating and minor shock sensations. On more discussion, the patient’s care partner remembered a bump of the head several months ago.

The outcome of the second opinion: We replaced the damaged wire and the person regained good tremor control and no longer experienced odd sensations.

This story is just one example from hundreds of patients I have seen for troubleshooting DBS problems. Most people (about 60%) require only a change in their stimulation settings. Hardware problems are not common (about 10%) but can cause a decline or loss of benefit that can be restored after an accurate diagnosis.

Patient Guide to Troubleshooting DBS Problems

Deep brain stimulation is a complex treatment that requires time and attention beyond the typical medical appointment, especially when there are problems. Decisions about stimulation changes are based on patient reporting of symptoms, medication dosing, examination and reporting from the care partner.  In some circumstances, I also use brain imaging as a factor when selecting stimulation settings. The following data is helpful to have when adjusting stimulation and I frequently ask my patients about most of these at each appointment:

  1. Three day symptom diary that includes the time of each medication dose.
  2. Medication list that is accurate in how medications are taken. (This may not match how the medication was prescribed)
  3.  Pre-surgical work up including symptom testing or examination off and on medication.
  4. Brain imaging.
  5. Time-line from the patient’s perspective that includes benefit, side effects, problems. (Critical to sort out problems)
  6. All past stimulation settings and corresponding effects. (Some of my patients keep a running list of settings and response)
  7. Comprehensive notes from the care partner or home video of symptoms.
  8. Open discussion about sources of stress that may interfere with or hinder benefit from stimulation.
  9. Reporting of other unrelated medical problems, new medications or non-prescribed substances.
  10. Lastly and potentially the most important is the patient’s comments on how things are going and if not going well, what could be the source of the problem.

Read about an unusual second opinion from my troubleshooting files.