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.

Redefining Life After DBS – Mt Kilimanjaro

What defines our patients? Is it a rating scale, a stage of disease or dose of medication? Should we make allowances or give in to a perceived limitations? Could we alter the disease course with empowerment by raising the bar of expectations?

My patients’ commonly describe a past filled with distant memories in a body that had found a new normal called Parkinson’s. But do we really know what is possible despite Parkinson’s? Is the pursuit of high adventure a crazy idea that should not be attempted by someone with Parkinson’s? Friend and fellow climber Nathan says no, anything is possible after a diagnosis of Parkinson’s, even when Parkinson’s requires DBS to control symptoms.

Nathan and three fellow climbers with PD moved past our perceived ideas about Parkinson’s. Sierra Farris and neurologist Dr. Monique Giroux traveled as medical team supporting and encouraging individuals with Parkinson’s and Multiple Sclerosis to realize life-long dreams and goals that measured beyond most perceptions.

The Leap of Faith Team consisted of fourteen people living with Parkinson’s disease or Multiple Sclerosis and twelve companions to climb Mt Kilimanjaro in Tanzania Africa July 2011.

The twenty-eight member climbing team was led by Lori Schneider, the first person with MS to climb the seven summits and is an international symbol of the courage and determination necessary to reach beyond the limits.

Through strong camaraderie, team members supported one another and celebrated daily victories that brought tears of enjoyment with each passing day. The team charted their course and the ideas about disease was left behind.

The  adventure encouraged and empowered others to not be defined by their disease but by their abilities and reach beyond a diagnosis. We learned that to alter the course requires believing in one-self as worthy of trying. The climb was about hope, empowerment and support for those living with PD, MS or any challenging condition. It is so important not to be defined by a disease or to give in to what others or society expects that you can or can not do. By coming together this team increased awareness for Multiple Sclerosis and Parkinson’s and showed the world that anything is possible with hope, determination, courage, empathy and support!

Top Benefits of DBS

What are the top-ten benefits we expect from DBS? The information in this post assumes the stimulation settings are optimized and electrodes are adequately positioned in the brain.

  1. Rigidity – muscle stiffness is typically a problem in Parkinson’s and can coincide with muscle pain typically in the shoulder or across the lower back. Stiffness and pain that improves with PD medications should also improve significantly with stimulation. As stimulation power increases, stiffness decreases until the muscle is moving freely and in most cases, pain associated with PD is much improved. If the body has other causes of pain, the pain may or may not improve completely. Dystonia is a common symptom of PD and feels like a tightening or cramping of a muscle and may be more of a problem when medications are wearing off, at peak dose or during exercise. Dystonia typically improves substantially with stimulation.
  2. Bradykinesia – slowness of movement is almost always a symptom associated with PD. Slow movement can steal away energy, cause problems getting up, rolling over, and getting out of the car or off the toilet. Slowness of walking is more obvious when PD medications are wearing off or too low of a dose. Stimulation improves slowness significantly and the body moves at a pace that is closer to normal.
  3. Tremor – tremor that occurs when the arm or leg is at rest or when the arm is moving responds well to stimulation. Chin, head, and voice tremor also respond to stimulation but has less predictable response to stimulation than arm or leg tremor. Typically stimulation will reduce tremor by 70% and sometimes more than 90%. The success of stimulation for tremor depends on the characteristic (pattern) of tremor. Stimulation can abruptly stop tremor, however this is considered a side effect if also associated with acute onset of muscle tightening, speech slurring, swallowing problems, facial contortions, blurred vision, walking problems or gait freezing, worsening balance or slowness.
  4. Shuffling & Posture – these two symptoms are usually related. If PD medications improve shuffling and/or posture, we expect stimulation to improve shuffling and posture. Sometimes these mid-line body symptoms improve only to become a problem later and is important to investigate for overstimulation or too low medication  and can be related to symptom progression.
  5. Speech – if PD medications improve speech, we expect stimulation to improve speech. If speech improves only to become a problem later, we investigate for overstimulation or too low medications and in some cases worsening speech is related to symptom progression.
  6. Sleep quality – stimulation almost always improves sleep disturbances related to PD. Sleep can be from several causes in some cases. Most importantly, if sleep apnea is a problem, treatment should be discussed with the physician and not discontinued without direction of the physician.
  7. Medication reduction – if stimulation improves the above symptoms as expected, medications are not usually needed at the doses used before DBS. Once medications are gradually reduced, dyskinesia becomes much less of a problem and may go away completely.
  8. Fatigue – feeling tired can be related to many factors and should be approached from a comprehensive approach. If fatigue becomes worse after stimulation is turned on, the cause may be related to stimulation settings, medication reduction or a body not quite ready for the increase in activity after DBS. Stamina may be very low before DBS and should be a targeted treatment after DBS in all patients.
  9. Weight gain – weight gain is not typically abrupt after stimulation is turned on but occurs over the following 12-24 months. Best defense is to increase calories burning activities and muscle mass. In some patients, weight gain is a positive change in the setting of chronic weight loss from Parkinson’s.
  10. Long-lasting – stimulation keeps working year after year as long as the battery is changed at the appropriate time and the stimulation settings are appropriate. Overstimulation is a large factor in worsening symptoms that can be reversed with a change in stimulation.

The above symptoms should be reviewed in detail prior to DBS surgery. With a good understanding of the person before DBS, troubleshooting stimulation problems becomes challenging and may require a troubleshooting expert to sort out. If the workup prior to DBS is adequate and DBS is offered, the therapy should always work for the symptoms that are responsive to PD medication.  There is a risk of worsening cognition and mobility from the implantation of the electrodes. For best results, the therapy should be performed and managed by expert DBS teams.

Sierra Farris is an expert DBS troubleshooter in Denver Colorado. Sierra offers a VIP program for people with poor results from stimulation.

Patient Guide to Solving DBS Problems

Deep brain stimulation is a complex treatment that requires time and attention beyond the typical medical appointment, especially when there are DBS 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.

DBS Outcomes – Advocating for better care.

In review of my DBS blog created 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 450 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?  A person submitted a story about experiencing worsening speech and gait problems after DBS. I could read in her words a palpable distress of lost hope. Although DBS is a highly beneficial treatment, as a leader in DBS programming, there is an obligation to shed light on a persistent problem for patients with DBS that may 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.

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.

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 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.

 

Typical and Atypical DBS Side Effects

Deep brain stimulation provides benefit when applied properly and the benefit should persist for decades. Configuring stimulation parameters to optimize benefit while avoiding side effects is paramount to prolonged success and patient satisfaction. Optimal stimulation requires precisely positioned electrodes into a specific location in the brain that is about the size of a pea. Therefore, surgical skill in electrode placement is the first step in success over the lifetime.

Applying adequate stimulation through an excellent positioned electrode is associated with lasting benefit and has less risk of causing symptoms to worsen right after surgery. However, stimulation induced side effects will occur if  stimulation is not adjusted properly. Using a less than excellent electrode may lessen side effects but may also lead to less benefit and require more battery power to reach the beneficial areas. Skilled programming adjustments are the second link in success and happiness with DBS. Even well placed electrodes can be rendered ineffective if not programmed properly.

Typical and Reversible Stimulation Side Effects

Well positioned electrodes can cause reversible stimulation induced side effects that can include any of the following signs or symptoms: tingling, numbness, poor coordination, muscle tightness, muscle twitching or contraction, sense of heaviness, speech change, swallowing change, worse walking and balance, vision change, dizziness, nausea, hot flash, anxiety, depression, mania, impulsivity, mental fog, verbal fluency decline, minor shocks or electrical surges, pulsations, coarse tremoring and pain.

The good news is  stimulation side effects are reversible by adjusting stimulation settings while maintaining benefit. Side effects do not lead to symptom improvement and therefore should be avoided.

Atypical Reversible and Irreversible Stimulation Side Effects

Poor or inadequate surgical planning or electrode placement can cause poor results and unintended persistent problems after surgery. New or worsening problems with walking, balance, muscle tightness, coordination, speech, mood and cognition can occur and may not be reversible. Applying stimulation using poorly positioned electrodes may cause or worsen these disabling symptoms.

The timeline of events is essential when investigating new or worsening problems after DBS surgery. Patients generally know when their body changed for the worse. If the change happened prior to activating stimulation, the surgical plan and awake intraoperative testing can be analyzed to discover any irregularities that may have led to worsening symptoms. If the change happened after adjusting stimulation, then the stimulation parameters may need further consideration. After the brain has healed from surgery, any decline in symptoms should be investigated and stimulation adjusted if indicated to eliminate side effects.

Bottom line

Stimulation should always work in the right patient with adequate electrode placement and proper stimulation settings. The skills and knowledge of the surgeon and programmer will set the bar for the success of DBS over the lifetime.

 

Considering DBS Earlier in Parkinson’s

Deep brain stimulation (DBS) improves overall quality of life and social functioning in patients in earlier stages of Parkinson’s disease, according to results of a two-year clinical trial.

The study, led by Günther Deuschl, a professor at Christian-Albrechts-University in Kiel, Germany, and Yves Agid, a professor in neurology and experimental medicine at the Hôpital de la Salpêtrière in Paris, France, is reported online in the New England Journal of Medicine on 14 February 2014. The researchers conclude that DBS was more effective than medical treatment in patients with Parkinson’s disease and early motor complications.

DBS is already established as a treatment for patients with advanced Parkinson’s disease.

It is not a cure, and it does not stop the disease from progressing, but in the right patients, it can significantly improve symptoms, especially tremors, and it can also relieve muscle rigidity. To perform DBS, the neurosurgeon drills a hole in the skull and inserts an electrode about 10 cm into the brain. The electrode delivers mild electrical signals that disrupt and block the brain impulses that cause Parkinson’s symptoms. A wire under the skin connects the electrode to a battery implanted near the collarbone. DBS can be done on one or both sides of the brain. The target areas are usually the thalamus, subthalamic nucleus, and globus pallidus. In this study, the target area was the thalamus.

The Study

The purpose of the 2-year clinical trial, called EARLYSTIM, was to assess the use of DBS in earlier stages of Parkinson’s disease, when “motor complications have just developed and before patients are significantly affected in their social and occupational functioning”. The study recruited 251 patients with early motor complications and randomly assigned them to receive either DBS or best medical treatment. The patients were of average age 52 and had had the condition for an average of 7.5 years. To measure effectiveness of the treatment, the researchers assessed quality of life measures from a questionnaire known as PDQ-39, and social functioning from a short psychosocial questionnaire known as SCOPA-PS. They assessed changes in key areas of motor disability and activities of daily living using the scale UPDRS II. They also assessed any improvements in complications resulting from use of Levodopa, one of the main drugs used to treat Parkinson’s.

Overall Results Show DBS Superior to Medical Therapy

The results showed that patients who received DBS had a 26% improvement in quality of life scores compared with no improvement in the medical treatment group. There was a similar result for social functioning. The results also showed that compared to medical therapy, DBS was significantly superior to medical treatment with respect to motor disability, activities of daily living, levodopa-induced motor complications, and time with good mobility and no dyskinesia.

Among adverse side effects, suicide or attempts at suicide were not very different in the two groups, suggesting the cause lies with the patients rather than the type of treatment, something that is important to take into account in patient counseling, note the authors. Deuschl says in a statement:

“The study showed surprisingly homogeneous results in favor of DBS compared with medical treatment. The most important result is that quality of life of these patients and their social functioning was significantly improved. It is also meaningful that the operation has fewer side effects in this younger population than in advanced disease,” he adds.

Implications

Deuschl suggests that the study has the “potential to change the international guidelines for the treatment of Parkinson’s disease and will put DBS as a treatment option at a much earlier stage of disease severity.” In an accompanying editorial, Caroline Tanner, an epidemiologist who lectures in health research and policy at Stanford University, describes the study as “one of the most rigorously conducted trials of neurostimulation”. However, she warns that the patients in the trial were not typical Parkinson’s patients: they were all under 60 years old when they underwent the surgery, they didn’t have dementia, and on the whole they responded well to the medication. Matthew Stern, Parker Family Professor of Neurology at the University of Pennsylvania, says: “While it is premature to recommend DBS to all patients with motor complications, particularly earlier in the course of PD, it can now be considered a treatment option in this group of individuals.” He says these results “will surely fuel the debate on the impact of DBS on disease progression further and underscores the need for long term follow up of the EARLYSTIM patients”.

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Speech Quality & DBS

Speech & DBS

Speech Spectrogram
Speech Spectrogram – Computerized Voice Assessment

Speech changes are a common symptom of Parkinson’s, tremor or dystonia. The cause is multifactorial and typically speech changes occur very slowly over time. (This distinction is important.) Speech can also be altered by deep brain stimulation and is one of the most common stimulation related side effects and great source of patient dissatisfaction. Almost all speech disturbances can be reversed if the speech change is related to stimulation.

Other causes of speech problems after DBS can occur from the surgery such as bleeding (stoke) or tissue damage. These complications are uncommon but are serious and may involve more than just speech, such as walking and thinking. Having a stoke from other causes (high cholesterol, high blood pressure) can also cause speech problems and are unrelated to DBS.

Speech changes can also occur from too low or too high medication dose, dyskinesia, tremor, fatigue and illness. The vocal cords can be a source of voice change but is typically noticed prior to DBS and should always be assessed by an ENT physician specialist. A change in speech can be a sign of a serious medical conditions.

Stimulation dose is not much different than medication dose. Too little dose – not enough benefit, too high dose – side effects occur. Stimulation and medication are similar in that there is a maximum benefit and always a risk of side effect if the dose is too high.

Useful Tips: The following are some tips that patients can use to assist their medical provider in troubleshooting speech problems after DBS.

Before DBS:

  1. See a speech therapist for a computerized speech assessment – on medications. This is the benchmark for all future speech assessments after DBS.
  2. Optimize speech, posture and breathing for the best possible speech before surgery.
  3. Optimal speech depends on optimal medication if you have Parkinson’s.
  4. Make a recording of your speech to use later if needed to assess speech changes.

After DBS:

  1. Write down for you doctor when your speech was the best and when you first noticed a change. Some patients remember one appointment that resulted in speech slurring. I see some patients that tell me speech was good a couple years ago and then started to get worse. This could be disease progression or it could be from a gradual increase in stimulation intensity. The time-line will help determine what caused speech to change. Note how your speech changed, such as loss of volume, mumbling, stuttering or slurring. If you have a recording of your speech when it was good, bring it to your appointment.

How I assess speech changes in my patients after DBS:

  1. If the speech change occurs prior to turning on stimulation for the first time, I assess and monitor cognition. If the speech change is related to a change in verbal fluency (cognition), it may improve over a few months. Verbal fluency problems are related to finding the right word or completing sentences (language aspect of cognition) but commonly lumped into the speech category after DBS.
  2. If the speech change is after stimulation has been on, I set up an appointment to specifically assess speech. The patient should be On medications for the appointment. I use a simple assessment to establish a baseline by asking my patients to read the rainbow passage. I audio-record speech if the problem is complicated. I then turn off one side at a time. If speech improves with stimulation off, I adjust stimulation parameters to eliminate the speech problems. This is generally not difficult if the speech problem is from overstimulation.
  3. Almost always, the cause of the speech problem is too high stimulation intensity. This is a very reversible cause and reducing stimulation intensity can resolve almost all speech problems related to DBS. This assumes good placement of the electrodes in the brain. During DBS surgery, I talk with my patients to ensure speech is not being impacted to optimize electrode placement. (One very good reason to have DBS while awake)
  4. A common myth is that only the left side of the brain is involved in causing speech problems. This is not true. The left brain does control language for many people, but then so does the right brain in some. Language and speech are two very different functions controlled by very different areas of the brain.
  5. Tremor is one of the most common causes of pushing stimulation too high. I think this is most likely because we can see the tremor and tremor will increase with emotions and stress. Some patients and medical providers expect tremor to just stop instantly and if it doesn’t, stimulation intensity is increased until tremor stops, even when stimulation causes the leg to drag, the hand to cramp, speech to slur or balance problems. However, like with other symptoms, it takes time for stimulation to work. Over-stimulating will stop tremor quickly but will more than likely cause un-necessary speech problems and most importantly can also cause swallowing problems, falls and increased slowness and stiffness (like the tin-man). Having appropriate expectations for DBS and knowing the limits can help avoid stimulation side effects and symptoms that mimic disease progression.

Walking and balance is worse after DBS, what can be done?

Unexpected declines in balance and walking are the two most common problems that result in dissatisfaction and seeking a second opinion after deep brain stimulation. Walking and balance problems jeopardize independence and can lead to injury from falls which calls for a serious investigation when mobility is challenged. We approach changes in mobility after DBS surgery in a step-wise manner to zero-in on the cause and to find solutions. Our process for troubleshooting mobility changes after DBS is outlined below.

  • Understanding the time-line is the key to finding the cause.

Questions to ask yourself – Did walking or balance problems occur before DBS? Only after DBS? Only after a change in stimulation settings and/or a change in medications? Is there a new medical problem that could explain the walking and/or balance symptoms?

A New Problem: If walking and/or balance problems are new after DBS surgery, we want to be sure your medication dose is adequate. Reducing medications after DBS is expected but the speed of reduction will vary. Safe medication reduction depends on your sense of stability, baseline balance, physical health and fitness. Additionally, if mobility improves with medications, stimulation may also improve mobility. Setting appropriate expectations for stimulation is one of the most important steps to long-term satisfaction with DBS.

Another cause of new onset mobility problems can be related to stimulation. Stimulation induced side effects of leg dragging, gait freezing, gait slowness, staggering, spontaneous falling, foot drop, toe dragging or loss of postural control can occur from over-stimulation, inadequate stimulation settings or poor electrode position within the brain. In the setting of less medication use after DBS is stable, changes in effective stimulation can also cause a new mobility problem due to a sub-therapeutic medication dose or  under-stimulation of the brain target. These are reversible causes of mobility problems.

Irreversible mobility changes can occur as a result of the surgery.  Bleeding in the brain is a known and uncommon risk during DBS surgery and can cause stroke symptoms that include walking/balance changes. Lastly, there is a rare chance of permanent mobility disturbances after DBS surgery -even before stimulation is turned on. This is very rare, not understood and unpredictable at this time.

An Old Problem that is Rapidly Getting Worse: If walking and/or balance problems were present before DBS and noticeably increased after DBS, the source of the problem could be caused by medication changes, the stress of the surgery, a new medication side-effect or a new medical illness. Stimulation sideeffects must be ruled out as a cause for worsening walking and balance. Stimulation induced mobility side effects may be accompanied by other stimulation side effects that include speech slurring or volume loss, facial spasm, swallowing problems, dizziness, blurred or double vision, visual waves phenomenon, tingling, numbness, surge sensation, slowness of movement, mood change or mental fog, muscle tightness or a new tremor. Sudden changes in mobility are typically tracked back to an event, such as an illness, medication or stimulation change. A fall or accident can result in damage to the DBS hardware system and this can cause a sudden worsening of mobility. A DBS check-up is very important in the setting of any loss of therapy or worsening symptoms, especially after a fall.

An Old Problem that is Slowly Getting Worse: Walking and balance requires complex control that involves multiple intact neurological systems. Changes in walking and balance are expected with Parkinson’s and the change is expected to be gradual and not sudden unless there are other factors. For instance, peripheral neuropathy, vitamin B12 deficiency, hypothyroidism, joint pain, spine problems and cognitive declines are common causes for walking and/or balance changes as we age. Coupled with the progression of Parkinson’s, additional medical problems can compound or worsen mobility.

Treatment Approach: Physical therapy before and after DBS is very important even if mobility is good. There are subtle changes with any neurological condition that can be restored or improved with skilled neuro-physical therapy. Finding a medical provider that is a good listener and open-minded will go a long way in solving a change in mobility after DBS. A comprehensive approach to your medical care before and after DBS will help to optimize mobility over your life-time. Exercise continues to be important in your treatment after DBS surgery. Weight gain is a possibility after DBS which increases the importance of starting and/or maintaining an exercise program. Perhaps the most important take-home point for this post: As Parkinson’s progresses, resisting the urge to increase stimulation intensity for walking/balance problems is critical to avoid over-stimulation side effects that can directly worsen walking and balance.

Deep Brain Stimulation Problems & Failures

Deep Brain Stimulation Problems & DBS Failures     Download Post

MANAGING DBS PROBLEMS & FAILURES AFTER DEEP BRAIN STIMULATION SURGERY

Sierra Farris, MA, MPAS, PA-C

Deep brain stimulation (DBS) is a surgical treatment for movement problems associated with Parkinson’s disease, tremor or dystonia. DBS is very effective in controlling many symptoms related to abnormal movement; however dissatisfaction with the therapy can occur at any time after surgery. Expectations for DBS are generally high as is the risks of having brain surgery. Expectations beyond what the therapy can provide are a high source of patient and family dissatisfaction. Adequate pre-surgical counseling is a key step in assuring you and your patient are in agreement about the expected benefit and risks associated with DBS.

When and where to pursue DBS Troubleshooting

Common causes of DBS failures, problems or dissatisfaction:

  • Inadequate or inappropriate adjustment to stimulation
  • Disease progression
  • Damaged DBS hardware or depleted battery
  • Inadequate placement of the implanted electrodes
  • Inadequate medications or expectations
  • Inappropriate diagnosis
  • DBS done too late to achieve optimal benefit

Our DBS Troubleshooting Clinic is a unique multi-day clinic for individuals with DBS seeking a second opinion about programming, determining adequate medication dosing and/or to investigate problems from stimulation or the hardware. Multiple visits with our team may be required to complete the assessment. All visits are tailored to each individual to investigate the cause(s) of dissatisfaction or ineffectiveness of DBS. 

We summarized the results from 50 people seen for troubleshooting below.

Problems ranged (in order of prevalence) from walking/balance, Off time, falls, speech, tremor dyskinesia and no improvement were the most common reasons for troubleshooting. These symptoms are commonly associated with disease progression and may not be investigated after DBS. We have learned from our troubleshooting experience that many symptoms that worsen after DBS can still be improved with careful and meticulous evaluation of the variables that can lead to worsening symptoms. Dr. Monique Giroux and Sierra Farris work together to find solutions to the many problems that can occur months to years after DBS surgery. Some patients will see a physical therapist or speech therapist to help fine tune the stimulation settings for optimal benefit.

Symptoms commonly associated with disease progression can be improved with therapeutic stimulation settings such as speech, walking, stiffness, slowness tremor and balance. Some people did not experience an improvement in symptoms including gait freezing, falls and balance, however, what is obvious in our results is sub-optimal stimulation settings can definitely worsen a person’s symptoms. Some of the patients in this series had DBS for over 5 years but were still improved with reprogramming. We feel that patients should have a thorough evaluation for worsening symptoms no matter how long they have had DBS.

We also believe patients should have confidence that the DBS is working as well as possible to be free of the concerns and stress that can accompany uncertainty. We include an evaluation and discussion about what should be expected from DBS and review the steps if DBS is not performing as expected. Our troubleshooting evaluation includes a medical consultation and structured DBS programming strategies to optimize benefit while avoiding or eliminating stimulation side effects. Surgical consultation is coordinated if indicated.

Read about three incredible individuals living with Parkinson’s disease that were seen in our troubleshooting clinic. Each was determined to find solutions for their unsuccessful DBS surgery and disability from stimulation side effects. You will read about amazing recoveries after proper programming and a new lease on life after revision surgery. Meet Charlene. Meet Dean. Meet Bill.

A pre-appointment consultation is available to patients who would like to discuss their concerns prior to setting up appointments for DBS troubleshooting. Call Celina Romero at 303-781-0511 for special instructions. We require brain imaging and surgical reports prior to scheduling to make sure we optimize Sierra’s time with you during the appointments. Average length of evaluation is 3 days. We have served many patients that live out of state. Learn more about our Comprehensive DBS Services or Sierra Farris, PA-C.