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QUESTION OF THE WEEK: WHAT IS DYSTONIA? CAN DBS HELP? October 21, 2013

Posted by meglambert2013 in Uncategorized.
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I was at a function the other night and my friend pointed out a woman in the room whose head was twisted to the side. The woman looked uncomfortable and had some difficulty eating her meal. I also noticed her and said ” She likely has cervical dystonia”.  My friend asked “What’s that?” and ” Can she ever get better?”

When talking about DBS surgery, the most common diagnoses that come to mind are Parkinson’s disease and Essential Tremor. However, dystonia is also a condition that DBS may help.  We are starting to see more dystonia patients referred to our DBS clinic, so I thought I share some information about dystonia.

What is dystonia?

Dystonia is a medical condition that causes involuntary muscle contractions that can negatively impact your ability to function on a daily basis.

There are two types of dystonia:

  • Primary dystonia describes symptoms that result only from dystonia.
  • Secondary dystonia describes symptoms that result from injury to or infection of the brain.

Three categories of dystonia describe the way the disease affects your body:

  • Focal dystonia describes symptoms localized to one part of your body (for example, your left arm).
  • Segmentalized dystonia describes symptoms affecting two or more nearby areas of your body (for example, left arm and left hand).
  • Generalized dystonia describes symptoms that affect your entire body.

What are the symptoms of dystonia?

Involuntary muscle contractions are the primary symptom of dystonia. They can cause your body to assume twisting, repetitive, or painful postures.

Your dystonia symptoms can be aggravated if you experience stress and anxiety. They usually occur during a specific muscle movement (for example, slowly closing your hand into a fist may bring on symptoms, while quickly closing your fist may not).

What causes dystonia?

The cause of dystonia is not fully understood, although primary dystonia is known to be hereditary. It is thought that the disease may be linked to dysfunctional communication between nerve cells in the basal ganglia—a collection of nerve cells deep within your brain where muscle contraction commands originate.

How is dystonia diagnosed?

There is no blood test or other simple procedure that can diagnose dystonia. Your doctor will analyze your complete medical history and order tests to rule out other conditions.

What are the treatments for dystonia?

In addition to medications and surgery, complementary therapies and supportive therapies should be pursued. Treating dystonia is most successful when the overall treatment plan addresses the whole person: body (physical medicine), emotions (mental health), and spirit (patient support). The treatment plan should address each of these areas. The treatment options for dystonia generally consist of several approaches including:

DBS Surgery for Dystonia

The FDA has approved DBS for primary dystonia for patients age seven or older. Primary (or idiopathic) dystonia is dystonia that is not due to a secondary cause.  Many of the primary dystonias are believed to be hereditary and may be due to genetic abnormalities.

The consensus among most experts in the field is that patients with primary generalized dystonia whose symptoms do not respond to medical therapy are good candidates for DBS surgery. Two recent controlled trials reported improvement of 40-50% and improvement in physical aspects of the quality of life up to 30%. These studies included patients undergoing DBS surgery for primary generalized dystonia and primary segmental dystonia. In both studies approximately 82% of patients were considered to have a successful outcome (defined as greater that 25% improvement in movement symptoms) at six months and beyond. More than half of patients had greater than 50% improvement at six months and beyond, and between 13-32% had greater than 75% improvement.

Here at the Barrow, we see quite a few patients in our Movement Disorders Clinic who have had DBS recommended as a treatment for dystonia and have undergone surgery. We are reporting some excellent outcomes.

The National Dystonia Foundation is a great place to find out more about dystonia:

http://www.dystonia-foundation.org

If you or a family member or friend suffers from dystonia and would like more information about the treatment options available here at the Barrow – including DBS, please contact me.

Regards,

Meg Lambert, BSN, RN, CRRN
DBS Program Coordinator
Phone: (602) 406-3865
Email: BarrowDBS @dignityhealth.org

DBS Question of the Week: What is Essential Tremor? Can DBS help? October 2, 2013

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Essential tremor (ET)  is a type of involuntary shaking movement in which no cause can be identified. Involuntary means you shake without trying to do so.

Essential tremor is the most common type of tremor.  It is often confused with Parkinson’s disease and dystonia.

Everyone has some tremor present, but the movements are often so small that they can’t be seen.

It is not known what causes essential tremor. Tremors occur when there is a problem with the nerves that supply certain muscles. Some research suggests that the part of the brain that controls muscles movements does not work correctly in patients with essential tremor.

Essential tremor can also occur with other brain and nervous system problems, such as dystonia, Parkinson’s disease, and certain nerve conditions passed down through families.

If essential tremor occurs in more than one member of a family, it is called familial tremor. This type of essential tremor is passed down through families (inherited), which suggests that genes play a role in its cause.

Familial tremor is usually a dominant trait, which means that you only need to get the gene from one parent to develop the tremor. It often starts in early middle age, but may be seen in people who are older or younger.

Because of stereotypes and a lack of awareness, many people with ET never seek medical care though most would benefit from treatment. An estimated 10 million Americans have essential tremor.1 If essential tremor is affecting your ability to live your normal life, DBS therapy may be able to help manage your symptoms. The Food and Drug Administration (FDA) approved DBS as a treatment for essential tremor in 1997. At Barrow, approximately 30%- 40% of our DBS patients are treated for essential tremor.

Below are some differences between Essential Tremor and Parkinson’s disease:

Essential Tremor Signs & Symptoms Parkinson’s Tremor Signs & Symptoms
Tremor mostly seen during action Tremor mostly seen at rest
Family history of tremor reported in the majority of patients (>50%). Rarely a family history (<10%).
Onset most common in middle age but can occur at any time in the lifespan Onset generally at ages between 55-65
Tremor is primary symptom – slowness, stiffness, walking and balance problems are not commonly seen. Generally involves slow movements rigidity (stiffness), and problems with walking or balance
Improves with primidone and propranolol in some cases. Usually improves with levodopa treatment.
Alcohol often improves tremor. No effect from consumption of alcohol.
Tremor worsens with emotional stress. Tremor worsens with emotional stress.

Because of stereotypes and a lack of awareness, many people with ET never seek medical care though most would benefit from treatment. An estimated 10 million Americans have essential tremor.1 If essential tremor is affecting your ability to live your normal life, DBS therapy may be able to help manage your symptoms. The Food and Drug Administration (FDA) approved DBS as a treatment for essential tremor in 1997, and here at the Barrow, approximately 30%- 40% of the patients that undergo DBS have essential tremor. We typically see between a 60-99% reduction in tremor after DBS surgery.

If you are in need of any additional information about Essential Tremor, the International Essential Tremor Foundation (IETF) is full of information and support. Look for them at www.essentialtremor.org.

The Movement Disorder Clinic here at the Barrow treats hundreds of patients a year with ET.  Please contact them at (602) 406-6262 for an appointment with one of our specialists.

If you are interested in learning more about DBS for ET, I would be happy to speak with you or answer your e-mail.

Best Regards,

Meg Lambert, RN
DBS Coordinator
Barrow Neurological Institute
Phone: (602) 406-3865
E-mail: barrowdbs@dignityhealth.org

Exercise and Parkinson’s Disease September 11, 2013

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QUESTION OF THE WEEK:  What kind of activity or exercise can I do following DBS surgery?

ANSWER:  Initially after surgery, we recommend that you do not participate in any contact sports or activities that could cause you to fall – steep hiking, bike riding, etc. Once you are healed in about 6 weeks, you may resume your normal activities, but always use common sense.

MORE ABOUT EXERCISE:

Parkinson’s Disease affects your ability to move, but exercise can help to keep muscles strong and improve flexibility and mobility. Exercise will not stop Parkinson’s disease from progressing, but it will improve your balance and it can prevent joint stiffening.  The type of exercise that works best for you depends on your symptoms, fitness level, and overall health. Generally, exercises that stretch the limbs through the full range of motion are encouraged.

You should check with your doctor before beginning any exercise program.

Here at Barrow Neurological Institute, the Muhammed Ali Parkinsons Center offers a variety of exercise and activity classes throughout the valley. All of the exercises in each of the following different classes can be performed at the seated level to meet the abilities of each individual.

  • Exercise/ The Art of Moving
  • Tai Chi
  • Golf Clinic
  • Expressive Art Workshop
  • Dancing
  • Tremble Clefts Singing Group
  • Voce Unidas Spanish Singing Group

I have also heard from several patients that have benefited from doing yoga.  One of our DBS patients told me about a new book that was written by a woman with Parkinson’s who lives in Tucson.  It’s called Yoga and Parkinson’s disease:A Journey to Health and Healing  By Peggy van Hulsteyn with Barbara Gage and Connie Fisher

I understand it’s on Amazon and has gotten some great reviews.

If you have any information on other exercise opportunities, books, videos, etc., please share it with us. Keep on stretching!

Regards,

Meg Lambert, RN
Barrow DBS Program Coordinator
(602) 406-3865 or e-mail  barrowdbs@dignityhealth.org

DBS Question of the Week August 29, 2013

Posted by meglambert2013 in Uncategorized.
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As promised, we are going to feature a new question each week that pertains to DBS surgery. These are real questions from patients who have undergone or are going to undergo DBS surgery. I was asked this one twice this week:

QUESTION:  When can I color, highlight, or perm my hair following surgery?

ANSWER:  Our neurosurgeons ask that you do not put any chemicals such as hair dye or perm solution on your scalp for at least 6 weeks following surgery. This is to ensure that the skin at the operative site has time to heal. Remember, the skin is very tender and chemicals could cause irritation.

So, for our patients who are planning on DBS in the future, we recommend that you get your hair done a week or so before surgery.

If you  have any questions about DBS surgery, please contact me at:

(602) 406-3865 or e-mail  barrowdbs@dignityhealth.org

Regards,

Meg Lambert, RN
Barrow DBS Program Coordinator

Asleep DBS Proves Safe and Effective August 22, 2013

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Up until recently, having to remain awake for part of DBS implantation surgery was a major concern for some patients. As you can see in the article below, Asleep DBS Surgery provides a valuable alternative for patients with qualms about remaining awake for the procedure.

In addition to greater patient comfort, asleep DBS surgery has advantages like:

  • No requirement to be off medication
  • Shorter duration of surgery
  • Targeting accuracy is equal to the awake procedure

Learn more about this exciting new therapy in this article from Science Daily, or visit the Barrow DBS website to learn more about our approach to Asleep DBS. We are one of only 3 hospitals in the country that offer this new, advanced form of DBS treatment.

Best,

The Barrow DBS Team
BarrowDBS@dignityhealth.org

 

Welcome to the Barrow DBS Blog! August 22, 2013

Posted by meglambert2013 in Uncategorized.
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Welcome to the official blog of the world-renowned Deep Brain Stimulation (DBS) Program at the Barrow Neurological Institute! We have created this page to help inform patients and families about our DBS program and share information with you about this “quality of life” procedure.  We believe that education is the key to successful outcomes and hope to provide a wealth of interesting information pertaining to DBS, movement disorders, the research that is being done here at the Barrow and other worldwide publications.

We will also be posting community events for patients, families and professionals who have undergone DBS, are considering surgery or are interested in learning more. Our goal is to provide our audience with a wealth of useful knowledge and the hope that these pages will grow to become an interactive support community for those who have been touched by a movement disorder diagnosis or have undergone DBS.

Keep checking back for more articles by the Neurosurgeons and Movement Disorder Neurologists on our DBS team. We will also be featuring “The Question of the Week” which will be answered by our DBS nurse, Meg Lambert, RN.

Finally, please don’t forget to read our exciting legal disclaimer to learn about the rules of posting here!

Regards,

The Barrow DBS Team

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