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OPUSLINKS.COM

A RESOURCE GROUP ON EMERGING ELECTROMEDICINE

JUNE/JULY 2006 OPUSLINKS.COM

NEWSLETTER ON ELECTROMEDICINE

VOLUME 1 / ISSUE 2

TO RETURN TO OPUSLINKS. PLEASE CLICK HERE

What’s Inside?

What’s New- Page 1-2

Motor Cortex Stimulation- Page 2-6

Vagus Nerve Stimulation- Page 6-7

Insurance Coverage WOW!- Page 7

What to Read- Page 8

Resources- 8-10

Bridget’s Corner- Page 10-11

Mission Statement/Disclaimer- Page 11

WHAT’S NEW?

Opuslinks.com is pleased to announce a new personal story addition from Jason in Australia! Jason had MCS surgery in December 2005. Jason has informed Opuslinks.com that he is the first individual in Australia to receive Motor Cortex Stimulation for severe, facial pain. Jason has a one lead or one channel Motor Cortex Stimulation device from Medtronic. Please read Jason’s story at: http://www.opuslinks.com/jason.htm.

Opuslinks.com wishes Jason the best possible future with his new device.

Opuslinks.com is looking for more personal stories! If you would like to share your personal story on Opuslinks.com, please consider the following guidelines: http://www.opuslinks.com/psinstructions.htm Opuslinks.com is especially looking for stories on other types of electromedical treatments for different illnesses like Parkinson’s, Electric Acupuncture for pain, Epilepsy and more. Story submissions can remain anonymous.

Due to illness the Opuslinks.com Newsletter will appear once every two months for at least six months. Please note that dates of release of the Newsletter may change according to illness.

MOTOR CORTEX STIMULATION-AT A GLANCE

Motor Cortex Stimulation (MCS) is sometimes referred to as Transcranial Magnetic Stimulation (TMS). Wilder Penfield was the first neurosurgeon to map the brain’s motor cortex. The motor cortex regulates many of the senses and movements within the body.

(MCS) is currently used for intractable Trigeminal neuropathy, post-stroke pain, other types of pain, central nervous system pain or neuropathy, and obsessive-compulsive disorder, (OCD). (MCS) holds promise for treatments of other disorders including; but not limited to, mental illness. For now, the possibilities are endless. Proof that MCS actually treats other disorders requires more research.

(MCS) surgery takes approximately four hours and patients are usually in the hospital for three or four days. The head is positioned in a stereotactic head frame. Physicians must place electrodes precisely on the malfunctioning areas of the motor cortex to try to obtain maximum pain relief or relief from symptoms.

The Stereotactic and Functional Neurosurgeon or General Neurosurgeon discerns where to place electrodes with the assistance of a special computer guided functional magnetic resonance imaging (fMRI). If the physician can locate the malfunctioning areas of the brain with the (fMRI) taken before surgery and sometimes during surgery, patients sometimes remain asleep for the surgery. A large incision about 7 inches wide in the shape of a sideways U is made on the surface of the brain. Incision size can vary depending on the area of malfunction to be surgically tested.

Electrodes on a contact plate, with a protective covering are attached to the dura matter of the brain using the established imaging. The dura matter is the first thin membrane on the surface of the brain. It connects many veins and blood vessels in the brain and spinal cord. The electrode leads are guided from the brain through the neck and connected to a pacemaker that is implanted usually just under the collarbone. The pacemaker is either implanted at the time of the first surgery or later depending on whether programming is successful or based upon individual hospital protocol. The implanted pacemaker contains a battery. The life of the battery varies depending on stimulation levels. Battery replacement is performed under general anesthesia when the battery wears out.

Patients are given a hand-held remote control to adjust stimulation or to turn it off or on. Many people do not feel the stimulation being sent to the brain. The physician adjusts stimulation levels with a hand-held physician programmer. Many combinations of electrical stimulation are programmed to send impulses through the leads for the best results. Reprogramming is used to adjust stimulation parameters. Reprogramming is done as an outpatient or inpatient. For some Stroke patients the pacemaker is only turned on in physical therapy or with a trained professional, at first.

Certain types of medical and electrical equipment can interfere with the device. Consult with doctors or manufacturers of the implant technology for more information. It is important to remember that a better outcome for relief from these conditions is reported in patients that seek treatment after the first stroke or within a few years of onset of some other disorders and before other surgical procedures are performed.

Some reports are showing that Stroke victims find relief from (MCS) because the stimulation promotes nerve tissue regeneration or because stimulation enforces other areas of the brain to compensate for the malfunctioning portions of the brain.

Usually, (MCS) and other forms of stimulation are only considered after several other treatments and medications are tired. Reports of between 30% to 80 % relief from (MCS) are reported.

One lead or One Channel ( MCS) Implantation VS. Two-lead or Two Channel (MCS) Implantation

An explanation on one lead vs. two lead implantation method was provided in the May 2006 Opuslinks.com Newsletter within the section on Peripheral/ Percutaneous Nerve Stimulation, (PENS). As with PENS, there is some controversy between neurosurgical professionals on which implantation method is best suited for each individual. Of course, the expectation of Motor Cortex Stimulation is to relieve as much pain as possible for the individual receiving an implanted device.

As stated above, the one lead or two lead channel needs to be precisely placed over the area of the Motor Cortex that will respond most effectively to the painful area within the body, brain, nerves, face, etc. Each lead has between 4-16 contact electrodes at the end of the lead that are placed precisely over the motor cortex. It would seem logical that offering two leads on the motor cortex of the brain would provide even more pain relief over one lead. So, it would seem even more logical that three or more leads over the motor cortex would provide even more relief. It is important from a layperson standpoint, to visualize the brain; especially each individual brain, with all the nerves and circuits tied together to create how we feel, act, move, think, create and so forth. WOW! Now, if a neurosurgeon were to place three or more leads, each with several contact electrodes on the end of each lead, on the motor cortex of the brain, a serious malfunction could potentially occur over pain relief or symptom relief from disorder.

Are two leads better than one? Actual proof of whether better pain or symptom relief comes from one lead over two leads is still in process. I am implanted with a Medtronic Synergy EZ device that allows for two-leads or two channels on the left, motor cortex, to control painful neuropathy on the right. I can tell you from over 2.5 years with a two-channel device that I have been tested a great deal with the use of only one channel on at a time and with two channels on at a time. I can relay from my own experience that I feel that I do receive much better pain relief with two-leads over using just one-lead. Of course, many neurosurgeons still believe that if ONE lead is PRECISELY placed on the area on the Motor Cortex, the individual will receive just as much pain relief over an individual with two leads. It is crucial that individuals undergoing Motor Cortex Stimulation surgery understand what type of device is being used for the surgical procedure and how many leads with contact electrodes will be implanted. Individuals need to decide for themselves after discussion with supporters and medical professionals what type of system is best and which type is preferred to try. Rarely, recurring seizures occur with some individuals that have an implanted MCS device. Seizures have occurred in individuals with both one lead and two. It is unknown what causes the seizures at this time.

Why are there so many variations of surgical, stimulation procedures at different medical centers?

Different doctors and hospitals have different requirements for surgical stimulation procedures. As the technology advances and more patients get stimulation surgical intervention, the surgeons and medical professionals understand what works best for their particular hospital set-up.

For instance, as little as three years ago many neurosurgeons first placed the electrodes in the brain or body in one surgery, usually on a Monday. The week after surgery the medical professionals tested the pacemaker device to discover whether patients received any relief. The following Friday or Monday, surgeons would place the device permanently if the stimulation proved effective. Some hospitals and neurosurgeons still utilize this protocol. The pain of two surgeries often takes away from the stimulation programming because individuals sometimes have a difficult time discerning whether they are actually getting pain relief. Pain relief depends on how each individual copes with pain. It is my feeling that if individuals are going to undergo a stimulation surgery, they should be allowed time to heal from the surgery and be offered a fair trial of the pacemaker before removal unless there is a serious or personal reason to remove the device sooner.

After several surgeries on different patients, some hospitals and neurosurgeons decided to implant the entire device in one surgery to allow for a fair test of the stimulation. Patients often complain of pain at the incision site, especially after the first surgery, which did not allow for a fair test of the device. From my experience, it took several months to achieve 80% relief from pain, showing a need to test the stimulation parameters for a longer time. Some doctors have different criteria for number of days in the hospital, what type of stimulation surgery is best for the individual, for pacemaker programming, pain medication after surgery, requirements involved in psychological testing before surgery and other criteria.

For actual implants in the brain, I have heard that some doctors require a three-week hospital stay, others ten days and still others four days to include a stay in the hospital area for one week more in case complications arise. Individuals come back a few weeks after surgery in most cases for reprogramming. Many other types of stimulation procedures are done in a one-day outpatient visit.

In the coming years more standardized protocols will be developed in all areas involved within the different stimulation procedures. The results of clinical trials often set the precedents for the way protocols are utilized across the board at many facilities. Please consult with prospective neurosurgeons or medical professionals at specific hospitals settings for more information about specific hospital protocols. It is often wise to obtain a second opinion if individuals feel inclined to research more.

Some hospitals provide surgical information and procedural information on hospital websites. The hospital websites include discounted lodging in the area, guest services, what to bring and information about the surgery. It is often more helpful for individuals to receive paper documents because of impairments with reading and retaining web information. Look online under Hospital guest services. Many hospitals will mail a packet of information to individuals after a consult appointment is set-up or upon request.

What is reprogramming and how long does it take?

Please consult with prospective neurosurgeons on their particular reprogramming protocols and information. There are thousands of ways to program the way that electrical signals are sent throughout the brain or body. A medical professional uses a master programmer to try different programs. The patient holds a “sensing pad” over the implanted pacemaker while the physician or medical professional calibrates different program parameters to transfer to the patient programmer and through the brain or body. Medical professionals watch the patient closely and ask them how they feel while programming. If a patient is uncomfortable the medical professional can turn down, change, or turn off the program immediately. Different program tests help to achieve the best medical result. Sometimes individuals build a tolerance to the electrical signals being sent throughout the brain or body. I relate this tolerance to when individuals build a tolerance to certain medications. So, different doses; or in stimulation cases, different programs, bring individuals back to a beneficial medical state.

Currently, some surgeons and hospitals have individuals come in for reprogramming in an outpatient clinic. Individuals are programmed for fifteen minutes to ½ hour and sent home. I feel that this is a dangerous situation because the program has not been given enough time to make certain that a seizure does not occur while driving home and that maximum medical benefit is achieved. Seizures can occur mostly with DBS and MCS stimulation. Seizures are not common but can occur and great care is taken to offer stimulation safety. Many hospitals and clinics reprogram throughout a half-day or full day in an outpatient setting. This allows the medical professional and individual with a pacemaker to test several different programs. The individual is programmed, walks around the hospital for ½ hour to an hour and returns to the clinic office to try other programs until the best program can be found. Individuals that experience major seizures from programming are usually required to get reprogramming on an inpatient basis. Previously, I spent three to four days in the hospital each time I was reprogrammed because I have had seizures. Now, I am programmed as an outpatient. I return for programming about every six months. Reprogramming or regaining stimulation benefit is different for different people. I have heard that some individuals are still utilizing the same program for two years or more. My programs usually last about six months. Individuals receiving fifteen minute programming sessions on an out-patient basis have reported needing reprogramming in as little as three weeks after programming.

What are the Parameters of MCS Programming?

A discussion on parameters will be offered in an upcoming, 2006 Newsletter. For now, please understand:

Amplitude/Voltage-the strength of the pulses of electrical stimulation

Rate-the speed and frequency of electrical pulses

Pulse Width- length/duration of a pulse of electricity

Again, please consult with trained medical professionals at each hospital center for information about surgical protocols.

Medtronic is the manufacturer of Motor Cortex Stimulation devices. Please see the Medtronic Website for more information on the various devices and implantation methods used. Please remember that Medtronic cannot legally give out some information on Motor Cortex Stimulation because the Food and Drug Administration (FDA) do not currently approve the ACTUAL MCS, SURGICAL PROCEDURE. The procedure is considered for off-label use only at this time. Once clinical trials are performed there is a possibility that the FDA will approve MCS Surgery and other stimulation surgeries that are not yet FDA approved. The FDA approval process could take ten years or more.

VAGUS NERVE STIMULATION FOR EPILEPSY AND DEPRESSION

Please see the great resources offered below on Vagus Nerve Stimulation

Vagus Nerve Stimulation (VNS) is used to treat epilepsy and depression. In February 2005, the FDA approved VNS to treat depression. (VNS) sends electrical energy to the brain from the vagus nerve. The vagus nerve is part of the autonomic nervous system. The nerve runs through both sides of the neck. The right vagus nerve works more for cardiac rhythm and blood pressure than the left. The nerve is located in the abdomen, travels through the chest, into the neck to the lower part of the brain. (VNS) helps to prevent seizures by sending electrical impulses to the brain. A surgeon implants the (VNS) device pacemaker under the collarbone and runs the leads to the vagus nerve. A surgeon makes an incision on the outside of the chest and in the neck Electrodes are guided around the vagus nerve on the left side of the neck. (VNS) surgery takes approximately 60 minutes. The procedure is performed under general anesthesia or sometimes under local anesthetic. A medical professional sets stimulation parameters to run for a certain period of time. The program is usually set to run 30 seconds of electrical stimulation along the vagus nerve, every five minutes. The cycles are programmed to turn off and on at different intervals. If a patient feels a seizure coming on, a small magnet is passed over the pacemaker to start programs to prevent seizure. The magnet is also used to turn the device off. Many patients will not feel the actual stimulation. The battery for the stimulator lasts approximately 5 years. Reports of 50% or more relief from seizures and depression are reported. New research on treating epilepsy with Deep Brain Stimulation (DBS) and Motor Cortex Stimulation is being conducted. Please consult with physicians or manufacturers for more information.

Dr. Jaimie Henderson; my neurosurgeon with Stanford Hospital, relayed to me in June 2006 that Stanford Neurosurgery and Clinics are now offering Vagus Nerve Stimulation for some cases of Epilepsy and Depression. A few months ago, a friend in Wisconsin relayed to me that the Medical College of Wisconsin, had a meeting with a doctor on Vagus Nerve Stimulation. Charles E. Donovan, III, book: Out of the Black hole: The Patient’s Guide to Vagus Nerve Stimulation and Depression was also discussed at this meeting. Please consult with the resource links above or below or with prospective doctors about Vagus Nerve Stimulation around the country, if so desired.

A Quick Insight on Insurance-What’s Ahead?

The August/September 2006 Newsletter will contain a guide to obtaining Insurance approval for stimulation or Electromedical surgical procedures.

As many people know, obtaining Insurance coverage can often be a daunting process.

Did you know that the Department of Workforce Development/Division of Vocational Rehabilitation Federal/State Government centers often have policies that may offer full payment of surgical and other procedures if Insurance does not approve the procedures?

Yes, it is true! Most State, Vocational Rehabilitation offices require that the procedure being requested, REDUCE THE IMPEDIMENT TO EMPLOYMENT WITHIN A REASONABLE AMOUNT OF TIME, USUSALLY SIX MONTHS. The service or procedure cannot be ongoing or past the allotted time frame to reduce the impediment to employment. Usually three consults from medical professionals and a rejection from insurance are required to obtain covered services. In most cases, the individual requesting payment of services must be receiving Federal Social Security Disability payments, be considered legally disabled, be eligible to receive training and assistance from State Vocational Rehabilitation offices and want to go back to work in a reasonable amount of time. These services are a wonderful option for those that are disabled and wish to work, which could not otherwise work unless a positive outcome from procedure or surgery is obtained. These services offer great hope to individuals that wish to work. The services are also cost effective to State and Federal Governments and taxpayers because the cost potentially eliminates SSDI payments throughout a lifetime. To read the State of Wisconsin DVR policy see: http://dwd.wisconsin.gov/dvr/policy/vr_program_policy.pdf

See especially page 14,15,16. For more information and for actual policies, please see the August/September 2006 Newsletter and the resource links below. Best of luck!

WHAT TO READ!

Book of the month!

Out of the Black Hole: The Patients Guide to Vagus Nerve Stimulation and Depression

By, Charles E. Donovan, III

Wellness Publishers, L.L.C. (October, 2004)

ISBN: 0974848417

Contact: www.VagusNerveStimulator.com

This book is a wonderful personal story from a man that suffered from severe, debilitating depression and treatments for many years until he found Vagus Nerve Stimulation for depression. Please see: Charles E. Donovan, III website: http://www.vagusnervestimulation.com/ for more information and to purchase the book.

RESOURCES

1) Disability Resources- To read the State of Wisconsin DVR policy to obtain medical/dental services see: http://dwd.wisconsin.gov/dvr/policy/vr_program_policy.pdf

See especially page 14,15,16. For more information and for actual policies, please see the August/September 2006 Newsletter and/or each particular State DVR office under Department of Workforce Development. Remember to ask for policies! Best of luck!

2) Manufacturer of Motor Cortex Stimulation devices and many other stimulation devices. Medtronic: http://www.medtronic.com/

3) Are you having a difficult time understanding frequently used medical terms used in medical and electrometrical practices? Please see the Medtronic GLOSSARY OF TERMS http://www.medtronic.com/corporate/glossary/a.html

4) Wish to understand some electromedical surgical procedures and the devices used in spinal cord stimulation and Motor Cortex Stimulation? Please see the Medtronic physician pages at: http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/neuro_neurostimulation.html

5) Medtronic booklet on Neurostimulation devices: http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/pdf/implantable_brochure.pdf . This link includes the rechargeable RESTORE (rechargeable pacemaker), SYNERGY; there are several types of Synergy products that are one lead, two-lead systems, INTREL-Usually one lead or one channel Internal Pulse Generators (IPG). This weblink includes information on leads used with 4-16 contact electrodes. Great Resource!

6) Run a search on Medtronic in the Search box for more information on any type of Medtronic product and procedure.

7) See Medtronic frequently asked questions for pain therapies at: http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/faqs/neuro_faqs.html#stim

8) See Tame the Pain from Medtronic for more information for patients with intractable pain. http://www.medtronic.com/neuro/ttp/ and http://www.medtronic.com/neuro/ttp/treatment_pacemaker.html

9) Motor Cortex Stimulation precautions and warnings from Medtronic: http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/risks/neuro_risk.html

10) A clinical trial in the United States for Motor Cortex Stimulation for Trigeminal neuropathy and post-stroke pain may start in as early as Spring 2007 at approximately 8 clinics throughout the United States. This clinical trial is dependent upon National Institutes for Health, (NIH) funding. Dr. Jaimie Henderson with Stanford Hospital will direct this trial. Strict criteria will apply.

11) Terrific article on Neuromodulation and the advancements being made at Cleveland Clinic Neurorestoration. Please especially see the side bar and article with Cleveland Clinic Neurosurgeon, Nicholas Boulis, M.D. http://cms.clevelandclinic.org/body.cfm?id=227&action=detail&ref=190

On Nicholas Boulis, M.D. http://www.eclevelandclinic.org/displayPhysician.jsp?display=/static-html/profiles/boulisn.html

BRIDGET’S CORNER

The Credibility of Patience

Having an illness or undergoing or performing any surgery or procedure obviously requires a great deal of patience. Over the course of the past few years I have learned much more about health care in the United States, some other countries, agencies and about others and myself with chronic, debilitating illness.

I have always believed that if a person has patience and respects honesty, without denial, in treatment and illness, credibility is finally obtained. Respecting patience in treatment often seems unobtainable and completely gone on certain days and in certain countries. Yet, within remembering personal and professional credibility, satisfaction with the truth and the potential to help many more people is reachable, sustained and moving the world of medicine, for all, forward. Have trust and patience. Be honest!

Thank you for taking the time to engage and read about Electromedicine. If you have further questions or concerns, please contact support@.opuslinkls.com. I look forward to the August/September 2006 Newsletter.

MISSION STATEMENT AND DISCLAIMER

Mission Statement and Disclaimer: The goal of www.opuslinks.com: A Resource Group on Emerging Electromedicine is to transcend boundaries in communication, to help patients and researchers make informed choices and to work in conjunction with other agencies to provide information and support. Please feel free to browse the website. It is the intention that this website be made accessible for everyone. Please be patient as we try to update and provide more information. The website is updated once per month. Make any recommendations or requests to the editors at: support@opuslinks.com. It seems to me that friendship and family should be about caring and communication. Caring about what happens to other people and humanity with a willingness to understand another person's life experience without denial and without a choice on any given day not to...and in disagreement, respecting another's values, if legal of course. BKelly 03/28/06 Disclaimer-OPUSLINKS.COM: A Resource Group on Emerging Electromedicine and S-PACE: A Patient Perspective to Understanding Medical Stimulation Technology, does not endorse any particular doctor, person or group whether highlighted or not in this website, book or other communication. All doctor and agency contact information is suggested only by our visitors, which may include physicians. For more information about a provider, please utilize the e-mail contact or links sections. OPUSLINKS.COM: A Resource Group on Emerging Electromedicine and S-PACE: A Patient Perspective to Understanding Medical Stimulation Technology offers research and resources, providing no warranty or responsibility to any of the information provided or to medications, devices or implantation methods used in surgical and medical processes, expressed or implied. The information and opinions provided on www.opuslinks.com and S-PACE: A Patient Perspective to Understanding Medical Stimulation Technology/Electromedicine is not at all intended to take the place of trained medical professionals. All individuals or groups seeking medical stimulation information, consult and surgery should contact trained medical professionals.

Disclaimer

Opuslinks.com: A Resource Group on Emerging Electromedicine and S-PACE: A Patient Perspective to Understanding Medical Stimulation Technology.