Thursday, July 30, 2009

Gui is making news on TV - News Channel 7 - WJHG

Walking with Gui
by
Reporter: Meredith TerHaar
Panama City Beach- Guilherme "Gui" Santos is passionate about karate. The sport is not only teaching this bright young man discipline and self-defense, it's helping him walk. Gui was born with a divided spinal cord, so his left foot doesn't lift when he walks. Karate has helped. "He has a very positive attitude," explains his karate instructor, Roland Peak. "I have never seen him get frustrated or give up, I can't really put into words how to describe his motivation. He never seems to be put out if he can't keep up with the other students, he is always giving it his best." "I'm already at a yellow belt with two black stripes on the tip of those yellow belts. It's kind of fun, it really helps my leg a lot," says Gui. Karate helps, but it's a device called the Bioness L300 that has made the most difference in the way Gui moves. The three part device sends an electronic shock to Gui's foot, telling it to lift, allowing him to walk. Without it he has to wear a brace and walk with a pronounced limp. "When I found out about this device and he tried it and could walk without the brace I almost cried. It was like a dream," says his mother Carmen deLaPenha. Carmen works multiple jobs. She'd like to buy the device for her son, but insurance won't cover the $6,200 cost. Thankfully Roland and local businesses like Beef O'Brady's have stepped in to help. "We've put together a grass roots effort with some businesses in the community, and those at Frank Brown Park, and our students to raise some money to offset the cost of the device. It's expensive on one hand but when you look at the benefits, it's well worth the money," says Roland. Carmen also posts updates on the web. "I started to write a blog, with that and with the help of Roland we got a lot of people involved. And now we have half of the money to buy the device." Doctors say it's possible regular use of the Bioness L300 could train Gui's muscles to work without it. Gui is determined to make it happen. "It took nine years to get the foot to do this, I believe in nine years it'll be lifting by itself I think."
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Monday, July 6, 2009

Blue Cross will not cover the Bioness L 300

Although I had a lot of hope that Blue Cross would at least help pay for the Bioness L 300, today I had the final answer.
No, they won't pay!!!
They explain to me that this device is considered as an experimental treatment by the FDA therefore Blue Cross has no obligation of paying for it.
Under the Medical the BCBSF Medical Policies I found the following:

Neuromuscular electrical stimulators do not meet the definition of medical necessity, as they are not the standard of practice for the use of NMES devices when used in the treatment of:




•Muscle weakness due to central nervous system, spinal, or peripheral nerve diseases/conditions affecting motor OR sensory pathways to and from the muscle(s) being stimulated (i.e., stroke, spinal cord injury, peripheral nerve injury);

•Injuries such as strains and sprains;

•Pain not associated with disuse atrophy.

The application of NMES for the treatment of scoliosis is considered experimental or investigational, as the available published clinical data does not support effectiveness when used in the treatment of scoliosis.


So now , my hope is that more people will help and donate.
 
Thank you all for your support.
 
And here is the rest of it. Read more!

Friday, July 3, 2009

Brazilian Flip-Flops for a cause

Hi Everyone, I just came back from Brazil and brought the most beautiful Brazilian flip-flops. I am selling them to help my son's fundraising. As you all know , we are raising money to help pay for his medical device. These sandals stimulate circulation in your feet as you walk, invigorating your stride and helping reduce muscle tension in the legs, back, and feet, so your feet can feel better at the end of a long day just by walking around the house. Imported from Brazil, the sandals have up to 600 variously shaped nodules (depending on shoe size) to gently massage the 72,000 nerve endings in your feet. This recharges blood circulation, revives feet, and helps relieve lower back pain or discomfort due to heel spurs, as well as the normal aches of a hectic day. Flexible silicone and PVC construction, while the open design helps feet stay cool and dry to prevent moisture or heat damage to sensitive toes and soles. The waterproof sandals can even be washed. And most important of all, they are just beautiful. Made in 8 different designs and 5 colors to please everyone’s taste. They are so fashion that you can wear it from the beach to the night out. You won’t find them anywhere else. Look the pics and if you are interested , please contact me and I will stop by. Send me an email at dlapenha@yahoo.com I just have a few and they are going fast!!!!! Thanks a lot!!!
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Tuesday, May 12, 2009

BEEF 'O' BRADY'S & UPS helping our campaing


Come join us at Beef ‘O’ Brady’s

At 13800 Panama City Beach Pkwy, #110-111Panama City Beach, Florida, 32407


 
Friday , May 15, 2009 Anytime for Lunch or Dinner

Help raise money for the campaign Walking with Gui
You can get a certificate at the UPS store located at
13800 Panama City Beach Pkwy Panama City Beach, FL 32407
You must bring the certificate with you and present it at the time of ordering.
Beef ‘O’ Brady’s will donate a portion of all sales to help purchase a Ness L 300 Neuro-stimulator

May 15, 2009 (Lunch or Dinner)



 
BE THERE OR BE HUNGRY!!!!



We hope to see you on Friday , May 15


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Friday, April 24, 2009

Choking’ Game Deaths on the Rise

At least 82 children have died in recent years as a result of playing the “choking” game, a bizarre but increasingly common practice, according to the Centers for Disease Control and Prevention.

The game, which involves intentionally trying to choke oneself to create a brief high, has been around for years, but it appears to be spreading. One theory is that the Internet has made it easier for kids to learn about the game. A search of YouTube turns up several videos warning about the practice, but also several troubling demonstrations by giggling adolescents showing how to play.

The deaths identified by the C.D.C. are based on media reports of the game over the past decade, but more than 60 of the deaths have occurred since 2005. The agency says the number of deaths is probably understated, and other experts agree, noting that choking game deaths, which involve accidental strangulation with a rope or belt, often look like suicides.

And here is the rest of it.The Web site GASP, which stands for Games Adolescents Shouldn’t Play, reports that 65 children died in 2007 alone. Mark Lepore, an assistant professor of counseling psychology at Chatham College in Pittsburgh, told The Houston Press last year that he believed 1,800 people in the United States had died playing the game in the past 10 years; most were children and teenagers.

The C.D.C. reports that most adults haven’t even heard of the choking game and have no idea their kids are playing it. Most of the deaths were among boys ages 11 to 16, and the average age was 13, the report said. Choking game deaths were identified in 31 states. “Because most parents in the study had not heard of the choking game, we hope to raise awareness of the choking game among parents, health care providers, and educators, so they can recognize warning signs of the activity,” said Robin L. Toblin, the study’s lead author. “This is especially important because children themselves may not appreciate the dangers of this activity.”

The game can be played in a variety of ways, but the goal is to deprive the brain of oxygen long enough to create a feeling of euphoria before passing out. Children may use their hands to squeeze the necks of friends, or they may use computer cord, scarves or ropes. In another version, kids bend down and try to induce hyperventilation by taking deep breaths followed by a “bear hug” from a friend. The game is not the same thing as autoerotic asphyxiation, another risky behavior that tends to be practiced by older teens and adults, in which masturbation and asphyxia are combined to achieve a more powerful orgasm.

In addition to discussing the dangers of the game with their children, parents should look for signs that kids may be playing. The game has several aliases. Parents should listen for names like Blackout, Flatliner, Fainting Game, California Choke, Dream Game, Airplaning, Suffocation Roulette, Space Cowboy and the Pass-Out Game.

Signs that a child may be engaging in the choking game include bloodshot eyes; marks on the neck; severe headaches; disorientation after spending time alone; ropes, scarves and belts tied to bedroom furniture or doorknobs or found knotted on the floor; or the unexplained presence of things like dog leashes, choke collars and bungee cords.

To learn more, read the full Houston Press story from April here. Or visit the GASP Web site here.
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Beware Parents!!!! New deadly game is killing our kids.

The fainting game, also commonly known as the choking or the pass out game, is a loose term that covers activities designed to induce a partial or complete loss of consciousness brought about by the intentional deprivation of oxygen to the brain for a period of time. There are two distinct methods used to achieve oxygen deprivation: strangulation and self-induced hypocapnia. The term 'game' is used because these activities have typically been pursued by children as recreation; the practice among adults appears to be uncommon and generally in the different context of the pursuit of erotic asphyxiation. However, experts state that for some teens, the choking game can take on elements of erotic asphyxiation. Extent of and reasons for its practice Here is the beginning of my post. Although the fainting game is believed to be practiced widely, few empirical studies have been done. No empirical study is known to have been done on the reasons for its attraction but anecdotally stated reasons include: • During school, to get out of class. • Peer pressure, a challenge or dare, a rite of passage into a social group or amusement over erratic behaviour. • Curiosity in an altered state of consciousness, the experience of a brownout, an imagined approximation to a near death experience or more recently, copycatting elements of the film Flatliners • A belief that it can induce a brief sense of euphoria (a rush sensation or high). • A belief that it may enhance erotic feelings. • The prospect of intoxication, albeit brief, at no financial cost. • An underlying lack of knowledge concerning the physiological mechanisms involved and the risk of neurological damage or death. A 2008 Centre for Addiction and Mental Health study found that at least 79,000 students in the Canadian province of Ontario participated in this act[1]. The 2006 Youth Health Risk Behavioral Survey in Williams County, Ohio found that 11% of youths aged 12-18 years and 19% of youths aged 17-18 reported ever having practiced it. [1] Mechanisms behind the activity There are only two mechanisms behind all of the many variations of this practice, both resulting in Cerebral hypoxia (oxygen deprivation to the brain). The two mechanisms tend to be confused with each other or treated as one but are quite dissimilar although both have the potential to cause permanent brain damage or death. The two mechanisms are strangulation and self-induced hypocapnia and work as follows: The vulnerable carotid artery, (large, red tube), and the vagus nerve running parallel on its left Strangulation A ligature such as a belt or rope around the neck, or hands or arm pressure on the neck compresses the internal carotid artery. Apart from the direct restriction of blood to the brain there are two other significant responses produced by pressing on the neck: • Pressing on the carotid arteries also presses on baroreceptors. These bodies then cause vasodilation (dilation (widening) of the blood vessels) in the brain leading to insufficient blood to perfuse the brain with oxygen and maintain consciousness. • A message is also sent via the vagus nerve to the main pacemaker of the heart to decrease the rate and volume of the heartbeat, typically by up to a third. [2] In some cases there is evidence that this may escalate into asystole, a form of cardiac arrest that is difficult to treat. There is a dissenting view on the full extent how and when a person reaches a stage of permanent injury, but it is agreed that pressure on the vagus nerve causes changes to pulse rate and blood pressure and is dangerous in cases of carotid sinus hypersensitivity. This method is responsible for most, but not all, of the reported fatalities. The method is especially dangerous when practiced alone and can be mistaken for suicide where the motivation is not known. Self-induced hypocapnia The second mechanism requires hyperventilation (forced overbreathing) until symptoms of hypocapnia such as tingling, light-headedness or dizziness are felt, followed by a breath-hold. This alone is enough to cause a blackout but it is widely believed that the effect is enhanced if lung air pressure is increased by holding the breath "hard", that is forcing exhalation while allowing no air to escape or by a bear-hug by an assistant. These later actions may augment the effects of hypoxia by approximating the Valsalva maneuver, causing vagal stimulation. The fact that hyperventilation causes rapid cerebral hypoxia is paradoxical because the body should be well stocked with oxygen after over-breathing. The mechanism here is that the blood is made abnormally alkaline as a result of the excessive elimination of CO2; this subsequent rise in blood pH is termed alkalosis. The symptoms of alkalosis are: neuromuscular irritability, muscular spasms, tingling and numbness of the extremities and around the mouth, and a dizziness, or giddiness, often interpreted as a sense of euphoria. This brief euphoria is what practitioners of the fainting game seek. Unfortunately alkalosis has other far-reaching and dangerous effects on the neuromuscular system and, among other things, interferes with normal oxygen utilization by the brain. In the body alkalosis generally induces vasodilatation (widening of the blood vessels) but in the brain alone it causes vasoconstriction (narrowing of the blood vessels). This vasoconstriction appears to be made even worse by a sudden increase in blood pressure caused by squeezing or holding the breath ‘hard’. The alkalosis induced euphoria can be followed rapidly by hypoxia-induced unconsciousness. The sequence of events leading to unconsciousness from hyperventilation is as follows: 1. Decrease in partial pressure of alveolar CO2. 2. Decrease in partial pressure of arterial CO2. 3. Increase in blood pH, (respiratory alkalosis). 4. Vasoconstriction of blood vessels supplying brain. 5. Pooling of the blood present in the brain at the time. 6. Brain rapidly uses up O2 available in the pooled blood. 7. O2 concentration in the brain drops. 8. Unconsciousness from hypoxia of cerebral tissue. Because the brain cannot store reserves of O2 and, unlike other organs, has an exceedingly low tolerance of O2 deprivation, it is highly vulnerable if vasoconstriction is not reversed. Normally, if the brain is hypoxic, autonomous systems in the body divert blood to the brain at the expense of other organs; because the brain is vasoconstricted this mechanism is not available. Vasoconstriction is only reversed by the build-up of CO2 in the blood through suspension of breathing. If this build-up does not happen quickly enough, or if the vasodilation mechanism itself is slow to respond, irreversible brain damage or death becomes a possibility.[citation needed] In some versions the bear-hug is replaced by pressure on the neck in which case blackout is a hybrid of strangulation and self-induced hypocapnia. Other mechanisms Unconsciousness may be induced by other methods although these are controversial: Pressure over the carotid sinus may induce a syncope (fainting) without any other action at all but this is difficult to reproduce and is not the basis of the game. For those susceptible to carotid sinus syncope, of which most people would be unaware until it occurred, this can be an exceedingly dangerous game.[citation needed] In both strangulation and self-induced hypocapnia blackouts the victim may experience dreaming or hallucinations, though fleetingly, and regains consciousness with involuntary movement of their hands or feet much to the amusement of the onlookers. Full recovery is usually made within seconds but these activities cause many deaths and permanent brain injuries every year, particularly when played alone or with a ligature. Permanent brain damage may be subtle and not immediately or eventually obvious to either the participants or its observers.[citation needed] Often, there it is impossible to tell if someone has brain damage or not. Injuries arising from the practice Any activity that deprives the brain of oxygen has the potential to cause moderate to severe brain cell death leading to permanent loss of neurological function ranging from difficulty in concentration or loss of short term memory capacity through severe, lifelong mental disability to death. Statistics on fatalities and neurological damage are controversial, no definitive, empirical study exists although the indications are that the practice is a significant contributor to death and disability, particularly among male juveniles in most developed countries. Many believe that deaths are significantly undereported because of false attributions to suicide. [2] One study by the U.S. Centers for Disease Control and Prevention (CDC) found sufficient evidence to indicate that since 1995 at least 82 youths between the age of 6 and 19 have died in the United States as a result of the game, see chart on the right. Of these 86.6% were male, the mean age being 13.3. 95.7% of these deaths occurred while the youth was alone; parents of the decedents were unaware of the game in 92.9% of cases. Deaths were recorded in 31 states and were not clustered by location, season or day of week.[1] Neurological damage is harder to attribute accurately because of the difficulty of linking generalised, acquired neurological disability to a specific past event. Incidental, or indirect, injuries may arise from falling or uncontrolled movements and crushing by a ligature or an assistant. Such injuries may include concussion, bone fractures, tongue biting and hemorrhaging of the eye.[3] The CDC encourages parents, educators and health-care providers to familiarize themselves with the signs of the game.[1] These include: discussion of the game; bloodshot eyes; marks on the neck; severe headaches; disorientation after spending time alone; ropes, scarves, and belts tied to bedroom furniture or doorknobs or found knotted on the floor; and unexplained presence of things like dog leashes, choke collars and bungee cords.[4] Other names The practice goes by many other names in different parts of the world or simultaneously in a single location. The names are usually one of several types: ones that assign drug-like qualities to the game, ones that describe the effects, ones that emphasize the risks involved, and others that come from pop-culture references. Common names in the United Kingdom, Australia and North America include: Airplaning, America Dream Game, Black Boxing, Black Out Game, Breath Play, Breathing the Zoo, Bum Rushing, California Blackout, California Choke, California Dreaming, California Headrush, California High, California Knockout, Catching Some Zs, Choking Game, Cloud Nine, Crank, Dream Game, Dreaming Game, Dying game, Fall Out Game, Flat Liner, Flatline Game, Flatliner Game, Funky Chicken, Getting Passed Out, Grandma's Boy, Groobling, Halloween, Harvey Wall Banger, High Riser, Hoola Hooping, Hyperventilation Game, Indian Headrush, Knockout Game, Passing Out Game, Pass-out Game, Purple Dragon, Natural High, Neckies, Redline, Rising Sun, Rocket Ride, Sandboxing, Sleeper Hold, Sleepers, Space Monkey, Speed Dreaming, Suffocation Game, Suffocation Roulette, The Game, The Mysto World, Tingling Game, Trip to Heaven Source: Wikipidia, the free encyclopedia And here is the rest of it.
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Wednesday, April 22, 2009

Ahhhh my Friends...What would I do without you??!!!

To all my friends and everyone that is helping with this fundraiser, What would I do without you!!!???
I really appreciate your pitching in on the fundraiser. You really did a wonderful thing. Your contribution means that very soon Gui will have his “technological device” as he call it. I wish you all could have seen the look on my son’s face when I told him about all the help his is getting from you. It was a smile that lit up the room . I understand that in today’s tough economic conditions some of you can may not be able to give a huge donation. It is not how much you give but how much love you put into giving. So, for those of you that can’t help financially I would like to ask that you spread the word about this blog. Or if you have an idea about how we could raise some more money, please write it down here. I have a friend that donated 2 tickets for the Seabreeze Jazz Festival 2009 – April 17, Friday at Pier Park – Panama City Beach, Fl. I am selling these tickets . If you would be interested in buying or know someone please look at email me. Another friend has posted this blog on her webpage. I also have done a flyer and if anyone could help with the printing expenses, I would greatly appreciate it. There are a lot of ways that everybody can help and any and every Help is Very Welcome. So again, THANK YOU SO VERY MUCH FOR YOUR KINDNESS!!!!!!! "If I speak in the tongues of men and angels, but have not love,I have become sounding brass or a tinkling cymbal.And if I have prophecy and know all mysteries and all knowledge, and if I have all faith so as to remove mountains,but have not love, I am nothing.And if I dole out all my goods, andif I deliver my body that I may boastbut have not love, nothing I am profited.Love is long suffering,love is kind,it is not jealous,love does not boast,it is not inflated.It is not discourteous,it is not selfish,it is not irritable,it does not enumerate the evil.It does not rejoice over the wrong,but rejoices in the truthIt covers all things, it has faith for all things,it hopes in all things, it endures in all things.Love never falls in ruins;but whether prophecies, they will be abolished; ortongues, they will cease; orknowledge, it will be superseded.For we know in part and we prophecy in part.But when the perfect comes, the imperfect will be superseded.When I was an infant,I spoke as an infant, I reckoned as an infant;when I became [an adult],I abolished the things of the infant.For now we see through a mirror in an enigma, but then face to face.Now I know in part, but then I shall knowas also I was fully known.But now remains faith, hope, love, these three;but the greatest of these is love." 1 corinthians 13:1-13
I would like to leave here my special gratefulness to those that extend me their hands, show me their solidarity and encourage me in this campaign. I am certain that in such a way, soon I will be giving thanks - also - for the concretion of this project. Thank you so very much!
  • Guilherme de Oliveira
  • Nilza Luna
  • Luiz & Bianca Vianna
  • Maria Lea Russo
  • Carmen Leonora
  • Stacy Watson
  • Alice de La Penha
  • Rex Spencer
  • Steve & Susanna Reeves
  • Marisa Lowe
  • Carol Dykes
  • Moshe
  • The Print Shop - James E. Buell
  • Diana Bennefield
  • Janet Reeves
  • Leila Luna
  • Maryann Bevilaque
  • Louis Bennefield
  • Armando & Regina
  • Joanne Demarest
  • Brittany Owens
  • Dra Vera LĂșcia T. Mendes
  • Inah L. Barbosa
  • Tereza Barth
  • Paulo Toledo
  • Ana Beatriz Vasques
  • The Eye Center of North Florida
  • Luiz Paulo L. Fernandes
  • Michael & Mara Brown
  • Paula Sotengo
  • Rolan Peak
  • The UPS Store - Panama City Beach
  • Yoshukai Karate - Panama City Beach, Lynn Haven and
  • Beef O Bradys- Panama City Beach, Lynn Haven and Callaway
  • Alessandro Bottmann Orlando
  • Gisele Ibragimova
  • James Rizzuto
  • Dan Sowell
  • Neli Luna
  • Jonathan Pudleiner
  • Kate & Aaron
Charity is the process of adding joys, decreasing harms, multiplying hopes, and dividing happiness, so the Earth will became the expected Kingdom of God”
Chico Xavier
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Monday, April 20, 2009

Foot Drop and Bioness

Foot drop is a deficit in turning the ankle and toes upward, known as dorsiflexion. Conditions leading to foot drop may be neurologic, muscular or anatomic in origin, often with significant overlap. The result is an abnormal gait.
Features
Foot drop is characterized by steppage gait. When the person with foot drop walks, the foot slaps down onto the floor. To accommodate the toe drop, the patient may use a characteristic tip-toe walk on the opposite leg, raising the thigh excessively, as if walking upstairs, while letting the toe drop. This serves to raise the foot high enough to prevent the toe from dragging, and prevents the slapping. Other gaits such as a wide outward leg swing (to avoid lifting the thigh excessively or to turn corners in the opposite direction of the affected limb) may also indicate foot drop. Patients with painful disorders of sensation (dysesthesia) of the soles of the feet may have a similar gait, but do not have foot drop. Because of the extreme pain evoked by even the slightest pressure on the feet, the patient walks as if walking barefoot on hot sand.
Diagnosis
 Initial diagnosis often is made during routine physical examination: A person with foot drop will have difficulty walking on their heels only- this is a good diagnostic test. The nerve that communicates to the muscles that lift the foot is the peroneal nerve. The muscles that push the foot down are innervated by a different nerve and often develop tightness in the presence of foot drop. The muscles that keep the ankle from turning in, as when you might sprain your ankle, are also innervated by the peroneal nerve and it is not uncommon to find weakness in this area, too. Numbness and tingling in the lower leg, particularly on the top of the foot and ankle also can accompany foot drop, although it is not always linked.
Pathophysiology
The causes of foot drop, as for all causes of neurological lesions should be approached using a localization focused approach before etiologies are considered. Most of the time, foot drop is the result of neurological disorder, only rarely is the muscle diseased or nonfunctional. The source for the neurological impairment can be central (spinal cord or brain) or peripheral (nerves located connecting from the spinal cord to an end site- muscle or sensory receptor). Foot drop is rarely the result of a pathology involving the muscles or bones that make up the lower leg. The muscle that is designed to pick up the foot is the anterior tibialis. It is innervated by the common peroneal nerve, which branches from the sciatic nerve. The sciatic nerve exits the lumbar plexus with its root arising from the fifth lumbar nerve space. The descending spinal cord nerve that leads to the sciatic nerve is found in the anterior horn of the spinal cord and communicates from the brain, specifically the cerebral cortex. Occasionally, spasticity in the muscles opposite the anterior tibialis exists in the presence of foot drop, making the pathology much more complex than foot drop. Isolated foot drop is usually a flaccid condition. There are gradations of weakness that can be seen with the foot drop. The gradations being---0=complete paralysis, 1.=flicker of contraction, 2.=contraction with gravity eliminated alone, 3.=contraction against gravity alone, 4.=contraction against gravity and some resistance, 5.=contraction against powerful resistance(normal power). Foot drop is different than foot slap, which is the audible slapping of the foot to the floor with each step that occurs when the foot first hits the floor on each step; although they often are co-occurrent.
 Treated systematically, possible lesion sites causing foot drop include (going from peripheral to central) 1. Muscle disease 2. Peroneal nerve (common i.e. frequent)- chemical, mechanical, disease 3. Sciatic nerve-direct trauma, iatrogenic 4. Lumbosacral plexus 5. L5 nerve root (common, especially in association with pain in back radiating down leg) 6. Spinal cord (rarely causes isolated foot drop)- poliomyelitis, tumor 7. Brain (uncommon, but often overlooked)- stroke, TIA, tumor 8. Genetic (as in Charcot-Marie-Tooth Disease and Hereditary Neuropathy with liability to Pressure Palsies) 9.
Non-organic
 If the L5 nerve root is involved the most common cause is a herniated disc. Other causes of foot drop are for an example: diabetes, trauma, and Motor Neuron Disease (MND), adverse reaction to a drug or alcohol, and multiple sclerosis. Treatment The underlying disorder must be treated. For example, if a spinal disc herniation in the low back is impinging on the nerve that goes to the leg and causing symptoms of foot drop, then the herniated disc should be treated. If the foot drop is the result of a peripheral nerve injury, a window for recovery of 18 months to 2 years is often advised. If it is apparent that no recovery of nerve function takes place, surgical intervention to repair or graft the nerve can be considered, although results from this type of intervention are mixed. Ankles can be stabilized by lightweight orthoses, available in molded plastics as well as softer materials that use elastic properties to prevent foot drop. Additionally, shoes can be fit with traditional spring loaded braces to prevent foot drop while walking. Regular exercise is usually prescribed. The latest treatments include stimulation of the peroneal nerve that lifts the foot when you step. Many stroke and multiple sclerosis patients with foot drop have had success with it. Often, individuals with foot drop prefer to use a compensatory technique like steppage gait or hip hiking as opposed to a brace or splint . video Read more!

Bioness L 300

Is there new help for foot drop? The NESS L300 is an advanced foot drop system designed to use mild stimulation to lift your foot to help you walk more safely and easily. If the L300 is right for you, it may be easier to walk on flat ground, up and down stairs, as well as on uneven surfaces. This light-weight device is designed to fit just below your knee and to be put on and taken off with one hand. Use of the L300 may eliminate the need to wear a rigid, heavy orthosis.

Is the L300 right for me?
The L300 is for people who have foot drop because of these medical conditions:
 Stroke
 Traumatic brain injury
 Multiple sclerosis
 Cerebral palsy
 Incomplete spinal cord injury
 Other neurological disorders of the central nervous system (e.g., Parkinson’s Disease)

 How It Works The L300 has three main parts that use wireless communication to "talk" to each other. The leg cuff is a small, light-weight device that fits just below the knee and contains electrodes designed to place stimulation where it helps you most. The gait sensor attaches to your shoe and lets the leg cuff know if your heel is on the ground or in the air. The hand-held remote control lets you adjust the level of stimulation and turn the unit on and off. After the initial fitting by your clinician, you just put the cuff on and you are set to go. NESS L300™ Foot Drop System Indications, Contraindications, Warnings, Precautions and Adverse Reactions Indications for Use of the NESS L300™ Foot Drop System The NESS L300 Foot Drop System is intended for patients with injuries to the central nervous system resulting in a motor deficit of the lower limb(s).

Contraindications • Patients with a demand-type pacemaker, defibrillator or any electrical or metallic implant should not use the NESS L300™ Foot Drop System. • The NESS L300 should not be used on the leg if a cancerous lesion is present or suspected. • The NESS L300 should not be used over areas of regional disorders, such as a fracture or dislocation, which would be adversely affected by motion from the stimulation. Warnings • The long-term effects of chronic electrical stimulation are unknown. • The Functional Stimulation Cuff (Orthosis) should not be applied over swollen, infected, or inflamed areas or skin eruptions, such as phlebitis, thrombophlebitis, varicose veins, and so on. • Simultaneous connection of the NESS L300 to the patient and to high-frequency surgical equipment may result in burns at the site of the stimulator electrodes and possible damage to the RF Stim Unit of the Functional Stimulation Cuff (Orthosis). For more information please visit: http://www.bioness.com Read more!

Breakthrough technology comes to RHCI - Bourne, MA - The Bourne Courier

Breakthrough technology comes to RHCI - Bourne, MA - The Bourne Courier

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What is Diatematomyelia?

The normal spinal cord begins at the junction of the skull with the cervical (neck) spine, and the cord continues down the spinal column until the mid-back region, the lumbar area. Beyond this point nerves continue down the spinal canal (as the cauda equina) and the spinal cord ends with the non-functioning tissue known as the filum terminale, which usually has the elasticity similar to a rubber band. The cord and the spinal bones (vertebrae) initially start out the same length but as the fetus and child grows, the vertebrae grow faster than the cord and therefore the cord effectively "ascends" within the spinal column. In people with no tethered cord the spinal cord ends up hanging freely within the vertebrae, protected by cerebrospinal fluid and, as there is no obstruction to its movement, it is able to flex and move freely with everyday activities.I had reservations about including all the following details in this section, but it may help to explain the embryology and creation of tethered cords. (Source of information: http://www.yoursurgery.com/). A tethered spinal cord is characterized by an abnormal attachment of the distal spinal cord to the surrounding tissues. The lower end of a normal spinal cord is found in the upper lumbar spinal canal. The attachment to the spinal canal or bones usually causes the spinal cord to end lower in the lumbar or sacral spinal canal. In the majority of cases, it is congenital (the patient is born with it). Developmental Anatomy • In the developing fetus the spinal cord is formed by a complex process. It forms from the same layer of cells that later forms the skin (called the ectoderm) • Beginning around the 18th day of development and extending to the 22nd day, the spinal cord is formed by a process called neurulation 1. The ectodermal layer thickens in the midline of the back forming neuroectoderm that first forms a groove and then a tube that drops below the surface to be later protected by bone and muscle 2. As the tube drops below the surface, skin closes over the tube 3. The tube begins to close first in the thoracic (chest) region and the closure spreads toward the head (to eventually form the brain) and towards the upper lumbar region • The lowest part of the spinal cord is formed by a different process called canalization and caudal regression during the 28-48th day of development 1. A group of ectodermal cells lying beneath the skin's surface at the primitive "tail" begins to break down in its centre to form a neural tube (canalization) 2. This tube then fuses with the neural tube formed by neurulation 3. This distal spinal cord degenerates to form the filum terminale 4. This process is less precise and therefore more liable to defects than neurulation. Failure of degeneration creates the entity of tight filum terminale • Beginning about the 45th day, a third process called regression occurs and extends into the first year of life 1. The lower neural tube then forms into the lowest part of the spinal cord (conus medullaris), the nerve roots that go to form the nerves to the legs (cauda equinae) and a fibrous cord from the conus medullaris (filum terminale) 2. By the process of regression and a greater growth of the bony spine than the spinal cord, the conus medullaris eventually ends up at the level of the second lumbar vertebrae. Pathology • Any event which interferes with the development of the spinal cord and cauda equinae can lead to the in growth of other tissues like fat and skin, which creates an abnormal attachment, or tethering of the spinal cord • Tethering of the spinal cord interferes with the normal regression process causing damage to the spinal cord as it is stretched and placed under abnormal tension • The tension injures the spinal cord and may cause symptoms .< • Other entities can be associated with tethering including tumours, cysts, tracts and spinal cord malformations. There are several distinct entities forming a spectrum of diseases, some of which are listed below. The skin over the tether is intact and usually the surrounding bone of the spine is incomplete (spina bifida occulta). This is also called an occult spinal dysraphism (OSD) 1. Dermal sinus: A tract lined by skin cells that leads from the skin to anywhere along the back of the spine 2. Lipoma or lipomyelomeningocele: malformations in which a fatty tumour under the skin is fused to the back of the lower spinal cord 3. Epidermoid or dermoid cyst: similar in formation to a dermal sinus, but a benign tumour is formed somewhere along the tract 4. Diastematomyelia (split cord malformation): usually involves the upper portion of the cord. The spinal cord is split in two by a bony spur 5. Tight filum terminale syndrome: a thickened filum over 2mm in diameter, a low lying conus medullaris and no other cause of tethering 6. Neurenteric cyst: a cyst lined by tissue similar to the gut or airway. It has a connection to the spinal cord, vertebrae or both. The spinal tumour may connect via a stalk to the gut 7. Myelocystocele: a complex malformation in which the end of the spinal cord is ballooned into a cyst and is associated with syringomyelia 8. Syringomyelia: dilatation of the central portion of the spinal cord. 9. Re-tether following myelomeningocele repair: after a SB repair, the spinal cord may become tethered by scarring to the area of repair Diastomatomyelia is a congenital disorder in which a part of the spinal cord is split, usually at the level of the upper lumbar vertebra. Diastomatomyelia is a rare congenital anomaly that results in the "splitting" of the spinal cord in a longitudinal (sagittal) direction. Females are affected much more commonly than males. This condition occurs in the presence of an osseous (bone), cartilaginous or fibrous septum in the central portion of the spinal canal which then produces a complete or incomplete sagittal division of the spinal cord into two hemicords. When the split does not reunite distal to the spur, the condition is referred to as a Diplomyelia (which is a "true duplication" of the Spinal Cord.) Diastomatomyelia is a "dysraphic state" of unknown embryonic origin, but is probably initiated by an accessory neurenteric canal (an additional embryonic spinal canal.) This condition may be an isolated phenomenon or may be associated with other segmental anomalies of the vertebral bodies such as Spina Bifida, kyphoscoliosis, butterfly vertebra, hemivertebra and block vertebrae which are observed in a high proportion of cases. Scoliosis is usually identified in more than half of these patients. In most of the symptomatic patients, the spinal cord is split into halves by a bony spicule or fibrous band, each half being surrounded by a dural sac. Other conditions, such as intramedullary tumors, tethered cord, Dermoids, Lipoma, Syringomyelia, Hydromyelia and Arnold-Chiari malformations have been described in the medical literature, but are exceptionally rare. Diastomatomyelia usually occurs between 9th Thoracic and 1st Sacral levels of the Spinal Column with most being at the level of the upper lumbar vertebra. Cervical Diastomatomyelia is a very rare entity. The extent (or length of spinal cord involved) varies from one affected individual to another. In approximately 60% of patients with Diastomatomyelia, the two hemicords, each covered by an intact layer of pia arachnoid, travel through a single subarachnoid space surrounded by a single dural sac. Each hemicord has its own anterior spinal artery. This form of Diastomatomyelia is not accompanied by a bony spur or fibrous band and is rarely symptomatic unless hydromyelia or tethering is present. The other 40% of patients have a bony spur or a fibrous band that passes through the two hemicords. In these cases, the dura and arachnoid are split into two separate dural and arachnoidal sacs, each surrounding the corresponding hemicord which are not necessarily symmetric. Each hemicord contains a central canal, one dorsal horn (giving rise to a dorsal nerve root), and one ventral horn (giving rise to a ventral nerve root.) One study of these entities identified the bony spur as typically being situated at the most inferior aspect of the dural cleft. They advise that if the imaging study appears to show otherwise, a second spur (present in about 5% of patients with Diastomatomyelia) is likely to be present. The conus medullaris is situated below the L2 level in more than 75% of these Diastomatomyelia patients. Thickening of the Filum Terminale is seen in over half of them. While the level of the cleft is variable, it is most commonly found in the lumbar region. The two hemicords usually reunite caudal to the cleft. Occasionally, however, the cleft will extend unusually low and the cord will end with two separate coni medullarae and two fila terminale (sometimes called "Diplomyelia"). The following definitions from may help in the understanding of these entities: Diastematomyelia (di•a•stem•a•to•my•elia) is a congenital anomaly, often associated with spina bifida, in which the spinal cord is split into halves by a bony spicule or fibrous band, each half being surrounded by a dural sac. Myeloschisis (my•elos•chi•sis) is a developmental anomaly characterized by a cleft spinal cord, owing to failure of the neural plate to form a complete neural tube or to rupture of the neural tube after closure. Diplomyelia (diplo.my.elia) is a true duplication of spinal cord in which these are two dural sacs with two pairs or anterior and posterior nerve roots. DIAGNOSIS: The signs and symptoms of Diastematomyelia may appear at any time of life, although the diagnosis, in modern times, is usually made in childhood. Cutaneous lesions (or stigmata), such as a hairy patch, dimple, Hemangioma, subcutaneous mass, Lipoma or Teratoma (at or near the level of the Diastematomyelia) override the affected area of spine in more than half of cases. Neurological symptoms are nonspecific, indistinguishable from other causes of cord tethering. The symptoms are caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include the "stigmata" mentioned above and/or foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence. In adulthood, the signs and symptoms often include progressive sensory and motor problems and loss of bowel and bladder control. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms. Adult presentation in Diastematomyelia is unusual. With modern imaging techniques, various types of spinal dysraphism are being diagnosed in adults with increasing frequency. The common location is from first to third lumbar vertebrae. Lumbosacral adult Diastematomyelia is even rarer. Bony malformations and dysplasias are generally recognized on plain x-rays (which, in modern times are less frequently done). MRI scanning is often the first (or "screening test") technique of choice for dysraphism as well as most spinal conditions. MRI will generally allow adequate analysis of the spinal cord deformities although it has some limitations in giving detailed bone anatomy. Combined myelographic and post-myelographic CT scan is the most effective diagnostic tool in demonstrating the detailed bone, intradural and extradural pathological anatomy of the affected and adjacent spinal canal levels and of the bony spur. Prenatal ultrasound diagnosis of this anomaly is usually possible in the early mid third-trimester. An extra posterior echogenic focus between the fetal spinal laminae is seen with splaying of the posterior elements, thus allowing for early surgical intervention and a favorable prognosis. Depending on whether the Diastematomyelia is isolated, with the skin intact or is in association with more serious neural tube defects, prenatal diagnosis of this condition is possible. The cause of progressive neurological lesions results from the "tethering cord syndrome" (fixation of the spinal cord) by the Diastematomyelia phenomenon or any of the associated disorders such as myelodysplasia, dysraphia of the spinal cord. TREATMENT Surgery: We believe that surgical intervention is warranted in patients who present with new onset neurological signs and symptoms or have a history of progressive neurological manifestations which can be related to this abnormality. The surgical procedure required for the effective treatment of Diastematomyelia requires the decompression of neural elements and removal of bony spur. This may be accomplished with or without resection and repair of the duplicated dural sacs. Our preference is to resect and repair the duplicated dural sacs since the dural abnormality may partly contribute to the "tethering" process responsible for the symptoms of this condition. Minimally Invasive Microsurgical Techniques are becoming available to accomplish these operative tasks. This most often results in complete relief of symptoms or stops the progression of symptoms. Observation Patients, who are asymptomatic and have been identified with this anomaly while being investigated for other unrelated issues, do not require surgical treatment. These patients should undergo periodic neurological examinations since it is known that the condition can be "progressive". In the event that progressive neurological manifestations are identified, then a resection should then be performed. - What is a Tethered Cord? The normal spinal cord begins at the junction of the skull with the cervical spine. The spinal cord fills the spinal canal throughout the neck and mid-back regions. At the upper portion of the lower back (the lumbar region) the spinal cord itself comes to an end. This is at the level of the first lumbar vertebral body. At this point, the end of the spinal cord is free, i.e. it is not attached to any of the surrounding structures. It is free to move as the person grows and as the lower back moves and bends. From the end of the spinal cord at the first lumbar vertebra level to the very tip of the spine at the level of the lower sacrum, there are only nerves that continue through the remainder of the spinal canal. A "tethered" spinal cord is a spinal cord that is tightly fixed at the distal or lower end so that there is not a normal amount of movement of the lower end of the spinal cord. During the formation of the embryonic spinal cord, the spinal cord fills the entire length of the spinal canal, from the first cervical vertebra (C1) to the end of the sacrum (S5). As the fetus grows during embryonic life, the bones of the vertebral column grow faster than the spinal cord itself. Thus, the distal end of the spinal cord comes to be located at the level of the first lumbar vertebral body (L1). If there is an abnormality affecting this normal "ascension" of the lower end of the spinal cord, something that binds the cord down toward the sacral level, the spinal cord is said to be tethered. This results in a tight pull or stretching on the lower portion of the spinal cord and can cause neurological damage as the tightness increases due to continued growth of the spinal column. The neurological deterioration caused by tethering is unlikely to stabilize while there is still potential growth of the spine. Growth puts further stretch on the tethered spinal cord. If neurological findings are already present then further deterioration can be anticipated. Children are obviously more at risk than adults. An adult spine is no longer growing so if the neurological condition is stable, there is less chance of change than with a growing child. However, even adults with tethered cords can deteriorate. This deterioration is believed to be due to the daily "wear and tear" on the tethered and stretched spinal cord. Even though the adult is less likely to show neurological worsening, one should always be aware of the possibility of change. Some patients have required untethering surgery in their 50's or 60's. What are the signs and symptoms of a tethered cord? The signs and symptoms of tethering may vary from patient to patient. However, the signs and symptoms of a tethered cord are relatively constant despite the underlying cause of the tethering. Some of the more common symptoms are pain in the lower back region, fatigue, change in gait or walking pattern, or recurrent bladder infections. Some patients may not exhibit any symptoms. Signs (findings on examination) may include muscle weakness, sensory loss, incontinence or loss of control of bowel and bladder function and scoliosis or curvature of the spine. Tethering may cause an obvious neurological deficit by the time of birth but many children do not experience neurological changes until growth of the spine causes further stretching and tension on the lower spinal cord. It is important to recognize tethering of the spinal cord at an early age. The majority of patients with a tethered cord will experience deterioration of their neurological function as they grow if they do not have release of the tethering. Once neurological deficits have occurred, many patients will not have recovery of lost function. Since loss of neurological function is often subtle and slowly progressive in these patients, and because it may be difficult to notice changes such as loss of bladder control in an infant, early recognition of tethering is essential. It is important to recognize this condition and treat it early. • Pain caused by a tethered spinal cord is usually located in the lower back region. It rarely radiates into the legs. The pain is increased with activity and relieved by rest. The typical patient will have to stop during activity to rest so that the pain will subside. This produces an "off again, on again" pattern of pain and rest so that it is usually easily apparent when this type of pain is occurring. • Weakness. In a patient with a tethered cord, any change in strength of the muscles of the legs or feet is a sign of concern. Many patients will have a certain amount of weakness that has been present throughout their life. However, any deterioration from their baseline examination is a sign of progression of the tethering. There should not be progressive loss of function in a patient with a tethered cord. • Sensory Loss. Loss of sensation may be seen when a patient is experiencing signs of tethering. The typical sensory loss is in the feet and around the genital area. • Incontinence, or loss of bowel and/or bladder control, is a common sign of progressive tethering. Children who show early signs of tethering may have never gained good control. Children who gain normal toilet training and then begin to experience incontinence are showing signs of progression of the tethering process. Any documented loss of control is a relatively urgent indication for surgical intervention. • Scoliosis, or curvature of the spine, is another sign associated with tethered cord. Progressive curvature of the spine in a patient with a known tethered cord is a sign of neurological progression. Occasionally scoliosis will be the initial symptom that there is a tethering process.
• Cutaneous Markers. Most patients with a tethered cord have a mark or discoloration of sometype on the skin of their lower back, usually in the midline. This is referred to as a "cutaneous marker". This may be a tuft of dark hair, a red coloration of the skin, a dimple that appears to go deep into the back, a localized subcutaneous collection of fat, or other similar abnormalities. The image below shows two different cutaneous markers in the same patient in the lumbar region of the back: a small area of very thin skin surrounded by a red discoloration and a separate area of red discoloration below. Other than the presence of a cutaneous marker, many children with a tethered cord are neurologically normal in their early years. Which diagnostic tests are important? When evaluating the spinal cord, the most helpful diagnostic images are obtained by Magnetic Resonance Imaging (MRI). These images give a clear view of the spinal cord and distal nerve roots as well as the surrounding structures. Since the images can be formatted in 3 different planes, a clear understanding of the anatomy is more easily achieved. Other imaging studies, including plain x-rays and computed tomography (CT) scans may also be helpful. What is the usual treatment for tethering of the spinal cord? Once signs and symptoms of spinal cord tethering are present, especially if progressive, conservative (non-surgical) management is rarely effective. Rest and physical therapy may be effective in relieving some of the early symptoms but the young patient is essentially doomed to worsen as time passes. The only effective treatment is surgical untethering of the underlying cause. The surgery for untethering of a spinal cord has two goals: first, to stop any further neurological deterioration, second, to hopefully see some improvement in any lost function. Once neurological function is lost it may never recover. This is why surgery is indicated when there are early signs of neurological change. Although the causes of tethering vary, the general principles of the surgery are similar. The overwhelming majority of tethering is in the lumbar or sacral regions of the spine so the surgery is usually performed on the low portion of the back. A midline incision is made in the skin. The muscles are retracted away from the midline and exposure of the bones of the posterior spine is accomplished. The spinous process and arch of bone covering the posterior or back portion of the spinal canal (lamina) is removed in order to gain exposure to the cause of the tethering. The dura, the covering over the spinal cord and nerves) is opened, exposing the tethering process. The operation is usually done through the operating microscope or with the surgeon wearing special magnifying glasses so that vision is enhanced. Lasers or other specialized surgical equipment may be used. Depending on the cause of the tethering, the surgery may last many hours. Six to eight hours is not uncommon in complex cases. This operation is not one that usually has a lot of bleeding. Blood transfusions are rarely required. The patient may be kept flat in bed for 24-48 hours. After that there is usually no need for prolonged bed rest. Depending on the neurological condition of the patient and the extent of the surgery, the patient may be restricted from vigorous activity for a few weeks. Common Causes of Tethering of the Spinal Cord Tethering of the spinal cord is almost always caused by a congenital condition, i.e. a birth defect. It occurs during the first 4-6 weeks of pregnancy. Tethering does not have one single cause. There are several different causes of spinal cord tethering. Although the underlying cause may vary, the signs and symptoms of tethering are generally the same among the various causes. Some of the more common causes of a tethered cord are as follows:
• Lipoma or lipomyelomeningocele
• Split cord malformation (diastematomyelia)
• Dermal sinus tract • Fatty or tight filum
• Myelomeningocele (spina bifida or open spine) Lipoma or lipomyelomeningocele causes tethering due to fatty tissue connecting to the lower end of the spinal cord. This produces tethering by the attachment of the fat to the surrounding tissues of the back. It is important to recognize that the fatty tissue in a lipoma is normal fat, not tumor tissue. It is normal fat in an abnormal place. It will only grow in proportion to the remainder of the fat in the body. In the surgical procedure, the fatty tissue is disconnected from the attachment to the spinal cord and removed, thus untethering the cord. Split cord malformation (Diastematomyelia) is a complex congenital condition where the spinal cord is split into two halves, each half usually functioning normally (see the MRI images below).The split is in a plane running front to back. The split in the cord can occur at any level and the split cords may reunite or not at some point below the split. Occasionally there is no obvious cause of the split but usually there is bone, cartilage or fibrous tissue that is between the two halves of the spinal cord. The presence of the tissue splitting the spinal cord causes tethering. The surgical procedure is to remove any tissue that is between the two split cords, thus releasing any tethering that is present. Dermal sinus tract is a small dimple-like opening in the midline of the spine that may connect deep into the spinal cord. The majority of dermal sinus tracts are located at the level of the sacrum or the lumbar region. The drawing on the right illustrates such a condition. Since these tracts may be openings that communicate with the contents of the spinal canal there is the possibility of meningitis developing. The dermal sinus attaches to the end of the spinal cord, causing tethering. The surgery is to remove any portions of the sinus tract that go into the spinal canal and to disconnect the sinus tract from the spinal cord, thus untethering it. Fatty filum or thickened filum is a small, threadlike piece of connective tissue that connects the lower end of the spinal cord to the sacral end of the spinal canal. This is called the filum terminale. If the filum is thickened and is shorter than normal, it is usually filled with fat and it pulls down on the spinal cord, causing tethering. This surgical procedure is usually the simplest of all untethering operations. A single level of bone is removed in order to allow access to the tight and thickened filum. The filum is easily identified and cut. The filum has no neurological function so the procedure is unlikely to cause any neurological damage. Myelomeningocele or spina bifida is the most common cause of tethered cord. Because of the open exposed end of the spinal cord at the time of birth, there is considerable scar tissue that develops at the end of the spinal cord and the area of the myelomeningocele known as the neural placode. Thus all children with myelomeningocele have tethering of the spinal cord from the time of birth. Because of this, these patients are watched closely as they grow for signs of neurological deterioration. How many children with myelomeningocele will require untethering as they grow? We don't know the final answer to that question. It is apparent, however, that the percentage is relatively high. If you follow children with spinal bifida from birth through adolescence and teenage years, current data would suggest that approximately 25 percent will have symptoms suggestive of tethered cord and benefit from surgical intervention. Although children with myelomeningocele can have multiple anomalies and problems, their problems are related to the malformations that occur prior to birth and, in general they should not worsen or deteriorate as time passes. Obviously there are circumstances where deterioration may occur, but the natural history of a person with myelomeningocele should not be loss of function with advancing age. If neurological function is being lost a search for a treatable cause is required. Deterioration in bladder control, such as decreasing ability to maintain some continence with medication and intermittent catheterization, is a common sign of tethering. Increasing weakness in the legs, changes in the strength of the arms and hands, and progressive curvature of the spine are symptomatic of tethered cord. It is unusual for a child with myelomeningocele to need tethered cord release at an early age. Some children have required untethering by 2 years of age, but this is quite uncommon. The more typical circumstance is for the child to be in the later childhood years before symptoms occur. However, if a child is operated at an early age and there is a significant growth of the spinal column yet to occur, the chance of needing a repeat procedure later in life is increased. A few children have required untethering two or three times because of the growth of their spine and due to their sensitivity to neurological changes caused by the tethering. Once spine growth has been achieved (this is usually achieved at approximately age 13 in girls and age 16-17 in boys) there is less likelihood of symptomatic spinal cord tethering. If a child has to be untethered at 10-12 years of age they are much less likely to need repeat untethering because there is not as much spine growth left to occur. So the question of the number of surgeries and the interval between surgeries is dependent upon many factors. It is dependent upon the sensitivity of the given individual to neurological changes that may be occurring, it is related to spine growth and it is related to the potential for scar tissue formation that the individual may manifest. The overwhelming numbers of children with myelomeningocele who require untethering require only one procedure. There is another point that is important to make. In the myelomeningocele population, when we speak of tethering, we are really speaking of symptomatic tethering. All children with myelomeningocele have a tethered cord caused by the scar tissue that forms due to the open myelomeningocele at birth and the surgery to close the opening. However, because the cord looks tethered, as seen on MRI, this does not necessarily mean that there will be symptomatic changes related to the tethering. In children with myelomeningocele the untethering operation is reserved for those who show deterioration. Surgery is not performed just because the MRI suggests that tethering is present. With this in mind, an untethering procedure will again produce tethering of the spinal cord because scar tissue naturally forms. Once the untethering has been accomplished the healing process starts and is associated with scarring. This leads to repeat tethering. However, it may not lead to symptomatic re-tethering. This is a very important distinction. The spinal cord will always look tethered on the MRI in patients with a myelomeningocele. An MRI is obtained prior to untethering operations to look for associated conditions. There may be evidence of a syrinx (loculated fluid within the central cavity of the spinal cord), cyst formation outside the spinal cord or small retained dermoid tumors that can occur from elements of the skin. Once tethering symptoms have begun in the patient with a myelomeningocele, it still remains a judgment call as to how soon to perform surgery. If the primary symptom is pain and the patient is relatively stable and not requiring significant medication, then it is certainly reasonable to wait. If there are bladder changes, i.e. the child is no longer able to have any periods of continence with intermittent catheterization, this is a much more urgent situation and surgery should be scheduled relatively soon. Any loss of strength can be devastating to a patient who already has weakness and this is a signal to proceed with untethering. As a general rule any neurological function that is lost may not recover. In patients who have shunted hydrocephalus, it is not uncommon for a shunt malfunction to mimic symptoms of a tethered cord. Patients with myelomeningocele may be very sensitive to any type of change affecting the lower spinal cord. In the case of a shunt malfunction, the pressure may build up in the spinal canal affecting the distal spinal cord and symptoms can mimic tethering. It is important to check shunt function before making a decision to proceed with untethering. There is no technique for closure of the myelomeningocele at the time of the original surgery that will prevent tethering. However, there are some techniques that may minimize the amount of tethering that occurs. The open neural placode at the distal end of the spinal cord can be folded over and anatomically made into a tube by suturing the edges of the open placode together. This makes the distal portion of the spinal cord tubular in nature, shaped like the rest of the spinal cord and tends to minimize the amount of scarring that occurs. It is easier for the flat, open neural placode to form denser scar to the overlying tissue of the lower back than a closed tubular-shaped distal spinal cord. It doesn't prevent tethering, but it seems to make the surgery for untethering easier and perhaps less risky. Scar tissue formation is a normal response of the body to tissue injury. There is no way at present to prevent scar formation. Many different types of tissue have been tried in an effort to minimize the scarring as a result of tethered cord surgery. Silastic, Gore-Tex™, artificial dura, and many others have been tried as closure over the area of the surgery. None have been found to prevent scar tissue formation. There is nothing a present that can prevent this process
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Sunday, April 12, 2009

So, who is Gui anyway?

Guilherme got his name after his maternal grandfather, Guilherme de La Penha, who was a famous Brazilian Mathematician. Guilherme is the Portuguese version of William; Guillaume is the French and Spanish version. The u is unpronounced - its purpose is to retain the hard G sound, the same as in the English word guide. The lh in the Portuguese word is pronounced the same way as the ll in the French / Spanish word as a result its pronunciation would be Gee'airm with a hard G sound and the r sounded more than in English.
So, to make things easy, he adopted his nickname GUI (Gee). GUI is a smart little boy that was born in Brazil, 1999.
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He moved to Florida in 2001 with his mom, to be with his grandmother and aunt. He is a very busy kid that likes to play video games and loves to read. Now, he is reading the series “Bone . GUI is a third grader student at Hutchison Elementary and his favorites subjects are Science, Math and music. After school he goes to Boys& Girls club where he has lots of friends As for sports, he has been practicing Karate for about one year and is now a yellow belt holder. Since he began training, his balance has improved considerately. GUI also participates in Boy Scouting; as a Bear Cub Scout and really enjoys all the many activities they have at the Den. On the weekends, GUI likes to play his video games. Sometimes he has some friends over. During the summer, he usually goes swimming at the condominium pool. At least twice a year, GUI goes to Tampa, Fl, where he is seeing by a group of health care specialist at Shriners Hospital. There he gets all his annual X-ray follow up to monitor the progression of his scoliosis; he also gets fitted for his AFO (brace) and his special shoes, all of that free of charge. GUI does not know what he wants to be when he grows up. Right now he is just interested in being a regular kid and having lots of fun.
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Like Me
By Emily Perl Kingsley
"I went to my dad and said to him, There's a new kid who's come to my school. He's different from me and he isn't too cool. No, he's nothing at all like me, like me, No, he's nothing at all like me. He runs in a funnyish jerkyish way And he never comes first in a race Sometimes he forgets which way is first base, And he's nothing at all like me, like me, No, he's nothing at all like me. He studies all day in a separate class And they say that it's called "Special Ed." And sometimes I don't understand what he's said, And he's nothing at all like me, like me, No, he's nothing at all like me. His face looks kind of different from mine, And his talking is sometimes so slow And it makes me feel funny and there's one thing I know; He is nothing at all like me, like me, No, he's nothing at all like me! And my father said, "Son, I want you to think When you meet some one different and new That he may seem a little bit strange, it's true, But he's not very different from you, from you, No, he's not very different from you," Well I guess, I admitted, I've looked at his face; When he's left out of games, he feels bad. And when other kids tease him, I can see he's so sad. I guess that's not so different from me, from me, No, that's not very different from me. And when we're in Music, he sure loves to sing, And he sings just like me, right out loud. When he gets his report card, I can tell he feels proud, And that's not very different from me, from me, No, that's not very different from me. And I know in the lunchroom he has lots of fun; He loves hot dogs and ice cream and fries. And he hates to eat spinach and that's not a surprise, 'Cause that's not very different from me, from me, No, that's not very different from me. And he's always so friendly, he always says hi, And he waves and he calls out my name. And he'd like to be friends and get into a game, Which is not very different from me, from me, No, I guess that's not different from me. And his folks really love him. I saw them at school, I remember on Open School Night -- They were smiling and proud and they hugged him real tight, And that's not very different from me, from me, No, that's not very different from me. So I said to my dad, Hey, you know that new kid? well, I've really been thinking a lot. Some things are different . . . and some things are not . . . But mostly he's really like me, like me, Yes, my new friend's . . . a lot . . . like me"
© by Emily Perl Kingsley. All rights reserved.
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Wednesday, April 8, 2009

To All my friends and anyone that would be interested in helping


I am writing this blog on behalf of my son Guilherme. He was born in 1999 with a birth defect called Diastematomyelia.
Diastomatomyelia is a rare congenital anomaly, often associated with spina bifida that results in the "splitting" of the spinal cord in a longitudinal (sagittal) direction. In children, symptoms may include foot and spinal deformities; weakness in the legs; low back pain and scoliosis. Guilherme has all the symptoms above plus a foot drop due to the weakness in his left leg. Foot drop is a condition of weakness in the muscles of the foot and ankle, caused by poor nerve conduction, which interferes with a person’s ability to flex the ankle and walk with a normal heel-toe pattern. The toes touch the ground before the heel, causing the person to trip or lose balance .To accommodate the toe drop, the patient may use a characteristic tip-toe walk on the opposite leg, raising the thigh excessively, as if walking upstairs, while letting the toe drop. This serves to raise the foot high enough to prevent the toe from dragging, and prevents the slapping. As for treatment, Guilherme uses an Ankle Foot Orthosis (AFO), brace, or splint that fits into the shoe to stabilize the ankle/foot. The problem with the long term of the AFO is that in the long term use the AFO reduces the muscle activity of the ankle and calf. In early February 2009, the Today Show showed a segment about a new device called Ness L300; this device is specifically design to treat patients with Foot drop The NESS L300 has three main parts that use wireless communication to "talk" to each other. The leg cuff is a small, light-weight device that fits just below the knee and contains electrodes designed to place stimulation where it helps you most. The gait sensor attaches to your shoe and lets the leg cuff know if your heel is on the ground or in the air. The hand-held remote control lets you adjust the level of stimulation and turn the unit on and off. After the initial fitting by your clinician, you just put the cuff on and you are set to go. On February 17, Guilherme was fitted for this device and for the first time he was able to walk without the brace. It was wonderful; he was able to run without tripping or falling. Well, the only problem is that the Health Insurance does not cover the expenses with this device. The main problem is that the cost of $6,200 for the equipment is somewhat prohibitive. So, I decided to start a Fundraising among friends and family. If you have any further information on agencies, foundations or individuals that might be able to help defray the expense I would appreciate it greatly.
If you are interested in helping, we are accepting donations via PayPal to the following email address : dlapenha@yahoo.com .
You can find the link under: Donations
I really appreciate your time and your help. God Bless you M. Carmen de La Penha For information about the Bioness L 300 , please look at http://www.bioness.com/
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