Monday, October 31, 2011

Possible life saving device created for children with hydrocephalus

Ten years ago, working on a night shift as a resident in a Madison emergency room, Josh Medow found himself treating a child with hydrocephalus, a disease in which fluid accumulates in the brain. The child had a headache and the anxious parents feared the worst — that a shunt designed to drain the fluid had failed and potentially lethal pressure was building up in the boy's brain.
Medow realized there was no way to check whether pressure was indeed increasing, short of intrusive and painful procedures. The child ended up in the operating room.


Read



Today, Medow, 38, and an attending neurosurgeon at UW Hospital, is on the verge of patenting a device he invented that allows doctors and even parents to easily keep track of cranial pressure in a child with hydrocephalus.

About 700,000 people have hydrocephalus, a disease in which the body is missing the ability to re-absorb the cerebral spinal fluid that bathes the brain. That fluid is normally made and drained three times a day, Medow said.
But in those with the disease, it builds up and creates dangerous pressure that can lead to brain damage, stroke and blindness. Normally, a shunt keeps the fluid drained, but studies show half of all shunts fail within two years. Sometimes, for example, they get clogged; fluid builds up and pressure increases.

Medow couldn't stop thinking about the problem. There had to be a better way, he thought, to know whether a shunt has failed than doing surgery on the shunt itself, an operation that can cost as much as $15,000 and cause considerable pain.
That night, when he got home, he made the initial drawings for a device that could eventually be made small enough to be implanted to monitor pressure and allow parents and doctors to know whether a shunt had failed without doing invasive surgery.


Medow realized there was no way to check whether pressure was indeed increasing, short of intrusive and painful procedures. The child ended up in the operating room


The long journey from that night in the emergency room to the invention of the tiny silicon implant that now sits on his desk is partly a tale of how medical devices come to be. But it is also a story of invention, full of twists and turns, moments of insight (that light bulb going on over the head), night-long sessions in Medow's basement where he initially cobbled together a prototype, and a trip or two to Radio Shack.



Read more: http://host.madison.com/news/local/health_med_fit/article_ba627bc2-fe9b-11e0-802d-001cc4c03286.html#ixzz1cMiIrXeB

http://www.hydroassoc.org/ha-updates/university-of-wisconsin-doctor-creates-pressure-monitor/

Saturday, October 29, 2011

Guest Post by blogger: David Haas

PepperKnowsBest welcomes guest blogger, David Haas. David is the author of Cancer is my Bitch,Pink's Vickory and Company, Haas Blag,and Janel's Pancreatic Cancer Angel's.







Cancer and the Benefits of Exercise



A good exercise routine, along with a healthy diet, is beneficial to a person’s health. Studies have shown that it can help reduce the risks of many diseases, including cancer. Research has also shown that exercise can be beneficial for individuals who have been diagnosed with cancer.

Exercise has been shown to reduce fatigue and improve overall fitness and health in cancer patients. It has been shown to increase the quality of life for individuals after diagnosis, in the middle of cancer treatments or those in remission. It helps the body stay stronger during and after therapies that tend to weaken the body.

Exercise is a good stress reliever and can improve a cancer patient’s overall mood. It can help an individual fight depression and anxiety that can be associated with a cancer diagnoses.

A physician should be consulted before any exercise plan is implemented. The type of cancer treatment, the stage the cancer has reached and the patient’s fitness level before a cancer diagnoses all play a role in the amount of exercise that will be suggested.

Different cancer types often have different fitness plans. For example, breast cancer treatments often cause weight gain and muscle loss around the shoulder areas, therefore, the focus may be on high-intensity cardiovascular exercises to help with weight control and weights that target strengthening shoulder muscles and surrounding areas.

Gastrointestinal cancer patients often lose weight and muscle mass, which makes building lean muscle a priority. Lung cancer or mesothelioma can cause lung limitations. A lung cancer and mesothelioma treatment plan may include moderate to low-impact exercises. Cancer patients often undergo surgeries or receive treatments that alter appearances. Exercise that helps to improve an individual’s body image after cancer treatments often improves quality of life.

Even after an exercise plan is implemented, a cancer patient should listen to their body. There will be good days and days that may be hard. Stretching or doing short intervals of exercise during the day can make it easier. Some yoga techniques or breathing exercises can help relieve stress without added exertion on days that are tough.

A fitness plan should be re-evaluated based on the changes in treatment and the healing or progression of the cancer. Research has not shown that exercise is a cancer cure, however, it is beneficial to the body’s overall health. Exercise and a healthy diet can help the body fight off other chronic diseases and improve overall wellbeing.

By: David Haas




Mesothelioma Cancer Alliance Guest Blogger -David Haas

Thursday, October 27, 2011

Autumn headaches


It is becoming a beautiful fall season here in the mountains of Western North Carolina. But with the beautiful colors comes allergies for many people without out hydrocephalus. But when you already have a hydrocephalus headache. Your itchy eyes and the added sinus pressure tightens up like a vice.

My headaches gets worse. I do the normal thing like most everyone and take an allergy medication. For me this has been making things worse.

At least the headaches.I'm sure this has something to do with my hydrocephalus.

I have blog before that I am unable to take adult allergy medication because it makes me nervous. I am nervous to the point my teeth will chatter and I will even shake like I'm cold.

I have been taking a children's allergy pill. It did not seem to be making me as nervous. But now the headaches are getting worse with the allergy medicine.

I'm not sure if everyone with hydrocephalus has the same problem when trying to take an allergy medication.

Wednesday, October 26, 2011

So What was is it?

The most common question when it comes to hydrocephalus. What type of shunt do you have? What shunt do you think most people with hydrocephalus have the most problems with. Usually the debate is about how many of us "Like me" will never try another programmable shunt again.
I don't want to post shunt manufacturer name on my site. I was contacted by a new friend last night and told about a complaint being made about a programmable shunt. I about fell out of bed! It was the VERY SAME! Shunt I had...

The reason I am not naming the shunt company is I don't want them to think I am in anyway involved in a lawsuit toward this company. It is just very important that it is brought to the attention of this company.


Tina is contacting the manufacturer about her malfunctions that were found. If you are interested in contacting Tina Grose Edwards you can click here to find her on her facebook page.

My previous shunt had at least 3 different malfunctions found by Dr. M . Those were just the ones that he found in surgery. Dr. M said he would  send my shunt  back to the manufacturer to be analyzed and improved for future research.

This made me feel some better until just now , talking to Tina I ask when she had her shunt surgery. The concept of the programmable sounded good at the time.  I had a different neurosurgeon at the time.He explained the different programs were so I would not have to have multiple surgeries if the setting was wrong on the shunt. It made good sense.

He said with my old shunt it was a medium flow and difficult to tell what setting I would be comfortable with...Oh! My goodness was that ever an understatement. My headaches were blinding. I still have hard feeling toward that doctor. He was going to let me die.


You have to remember I had never heard of hydrocephalus. So I only knew I had a shunt. I never knew I had a condition. I had a brain tumor.

Every 2 to 3 weeks I was rushed back to the ER to change the setting of the shunt. I would not just have a severe headache and need to change the setting. I would have tremors to the point I could not stand. Or half the time I was loosing my sight.

I had to find another doctor to find that there was something wrong with the shunt. We knew nothing about this condition but all this doctor could do is repeat "There's nothing wrong with the shunt!"

Tuesday, October 25, 2011

Bryan Stow had another infection



I was reading Bryan Stow's update a few days ago. The update told he had a fever showing he probably had an infection once again.

I know the fatigue from this infection really pulled his system down even though they took Bryan to the rehabs trauma unit. Physical Therapists still did therapy with him. I know it's important to keep his muscles mobile but give the man a break. If he has an infection this would mean he would be extra fatigued and tired!

I was in the hospital for 30 days when I was 8 years old, after my brain tumor surgery and shunt surgery. I also had outpatient physical therapy.

I had to learn how to walk. I could not even remember how to put my foot down on the grown from heal to toe. My muscles atrophied. At 8 years old I did not understand this at all. It was a very confusing time to have to start crawling through my house at 8 years old once again.

Monday, October 24, 2011

Gabrielle Giffords is in Asheville


Gabby arrived in Asheville on Sunday for two weeks of intensive therapy sessions as she continues to recover from a gunshot wound to the head. She is expected to be working with the same therapists she has worked with for months in Houston.

There are no reports where Gabrielle will be receiving therapy. After blogging on Gabby's condition for so long and educationing others about hydrocephalus and her condition. I am so happy that Asheville has a rehabilitation system to help her.

The Arizona Congresswoman is reported to be staying in the area until November 4. No other details were given. Mission Hospital in Asheville was contacted  but they did not have any information about the congresswoman's arrival or therapy.  Just my opinion but with HIPPA laws, the hospital could have  information but unable to release any information.

With Gabriel's injuries and handicaps. I think she will be going to one of our more advanced therapy centers.  CarePartners Thereputic Hospital could give her the most extensive and advanced therapy. they have a therapeutic pool they keep at 90 degrees. CarePartners also has many differnt accomidations for patientents with numerous handicapps.

I looked into there program when I was at my worst. They have a wonderful tramatic brain injury program. I was unable to do the program because it was a half day program. I was too weak at the time. I found out later that I was bed ridden because of a faulty shunt.

Gabriel Gifford was shot when she was speaking at a public event Giffords is recovering from a brain injury suffered on Jan. 8 in Tucson. Six people were killed and 13 were wounded, including Giffords, when a gunman went on a shooting rampage during a political event.

To releave pressure on her brain a Skull flap had to be removed to prevent extenxive swelling. This surgery saved Gabriel's life.

Months later when when a synthic skull flap was replaced Gabriel also had a shunt placed at the same time. The shunt will help to balance the spinal fluid around her brain since I'm sure after the tramma of being through a gun shot her head does not know how to feel anymore.

I just want to say "Welcome to Asheville"

Saturday, October 22, 2011

Hydrocephalus around the World

I found this story in one of my hydrocephalus groups. This one reminded me about my own doctor.

In 2003 Dr. McLanahan replaced a very faulty shunt for me shunt for me. I think I have blogged before that he saved my life. The shunt I had had at least 3 different malfunctions.

He was the first neurosurgeon after seeing 3 other to do an isotope study to test the flow of the shunt.

I can't remember exactly how long after my surgery it was they went  to the other country to do there missionary work but it seemed it was a year or 2 after my surgery in 2003. I will look to see if I can find information on the great things Dr. McLanhan and  the other doctors, nurses and PAs that went to the third world country that did not have extensive neurological treatment.

 They did all kinds of surgeries while they were there.

 They prefromed surgeries on brain tumors and hydrocephalus. They saw injuries and cancer while they there. I'm sure people were lined up waiting needing treatment.

 I really admire Dr. McLanhan for the work that he does. I feel confident every time he doe surgery on me because he has done extensive studding of hydrocephalus in Germany. The anti-syphon device I have now came from Germany. Dr. M says they hold up better and he has better results from the device.

Here is a link I recently found found about Dr. McLanahan...
http://health.usnews.com/best-hospitals/carolinas-medical-center-6360280

Be sure to read the story about the Unganda Babies at the bottom... I was un able to close the open space....











                 
              Series 2011 | Episode 13 | Uganda's Miracle Babies

            Cast and Crew Information

            Cast


            Journalist or Reporter
            Jenny Kleeman

            Crew


            Producer
            Suemay Oram
            Watch this episode now on 4oDJenny Kleeman with 9 month old Kasimiri at the CURE hospitalJenny Kleeman and Suemay Oram travel to Uganda to investigate hydrocephalus: a preventable yet misunderstood condition that affects a quarter of a million babies a year in Sub-Saharan Africa.
            They visit Africa's only paediatric neurosurgery hospital and meet the mothers in a race against time to save their babies' lives.
            Hydrocephalus - or 'water on the brain' - occurs when fluid builds up inside the skull, putting huge pressure on tissues inside, causing brain damage and death. Hydrocephalus has many causes, but in Uganda most cases develop when babies contract infections after being born in unsterile conditions.
            It is more common than deafness or Down's syndrome worldwide, and easily treated in the developed world. But in Africa, few hydrocephalus babies get medical attention. Without treatment, 90% will die before their second birthday.
            The team begins their journey at the CURE hospital in Mbale, eastern Uganda, where mothers are praying for their babies' lives while they wait for brain surgery. The hospital treats 4000 children a year, with 20 new hydrocephalus cases arriving every day.
            Kleeman meets Dr Nekaka, who is examining Sarah, a two-month-old who needs urgent surgery. A scan shows that hydrocephalus has already left her brain damaged, but with early treatment, Sarah's brain might grow back and recover.
            On the packed ward, Kleeman meets Loy, and her nine-month-old son Kazimiri, who is in the advanced stages of hydrocephalus. It took Loy six months to borrow and save the money to pay for their transport here, and she had to watch Kazimiri deteriorate while she tried to scrape together their fare.
            Kleeman and Oram are invited into the theatre as the surgeon, John Mugamba, operates on Sarah and then Kazimiri. Dr Mugamba is one of only five neurosurgeons in Uganda. He tells Kleeman that most cases are entirely preventable, but poor neonatal care, poverty and a lack of surgeons mean many die needlessly.
            Sarah's surgery is straightforward: her parents brought her in early so her treatment was simple. But Kazimiri's condition is so poor that the surgery has to be abandoned. Dr Mugamba tells Loy he will wait a week before trying again.
            Hydrocephalus is particularly common in the least developed parts of the country. In Gulu, the team meet Winnifred, whose daughter shows advanced symptoms. Like Kazimiri and Sarah, Oroma was born a normal baby, but her head began to swell after an infection.
            Winnifred tells Kleeman her husband left her after Oroma started changing. She says that local people insult her and say that she's bought a curse on the village.
            The team returns to the hospital just as Kazimiri comes out of his second surgery. Dr Mugamba has managed to save his life, but only by inserting a drainage tube into his head.
            Loy won't know the extent of any permanent brain damage until Kazimiri is older. The tube will need to be replaced with further surgery as he grows. Getting him to hospital once has already bankrupted her family, but Loy had decided to fight for his life, whatever the cost.
            While Kazimiri is still in hospital, the team hears that Sarah is recovering well from her surgery. They travel to see her at home in her village and find that her condition has already improved only five days after treatment.
            She's lucky to have had the operation early. Sarah's father, Oluport, tells Kleeman: 'She will be somebody who can go to school, maybe work, by herself. Even when she woke up today, I saw that she was a bit better, and I felt very good.'
            Watch now on 4oD

            Clips from Episode 13

            On TV

            First Shown

            DateTimeChannel
            Friday 21 October 2011Channel 4

            Last Shown

            DateTimeChannel
            Friday 21 October 2011

            Friday, October 21, 2011

            Complications of hydrocephalus

            Life-Threatening Complications of Hydrocephalus

            Hydrocephalus is almost always treated successfully with surgical placement of a shunt or an ETV; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting or ETV occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt or an ETV. We encourage you to stay alert and informed. Feel free to call or email the Hydrocephalus Association for more information about any of the complications listed here.
            Knowing what symptoms to watch for will help you become more at ease. Although the early symptoms of shunt malfunction or infection in children—fever, vomiting and irritability—are similar to many childhood illnesses, you will learn to determine the symptoms associated with shunt failure in a particular individual. Adults tend to exhibit the symptoms they experienced before treatment when there is a problem. If you have any doubt about symptoms, don’t hesitate to contact a doctor. If you suspect there is a problem with the shunt, you are wise to have it checked by the neurosurgeon rather than ignore it. It is better to have a false alarm checked than to leave it unattended. Remember, although shunt complications can be very serious and become life threatening, they can almost always be treated successfully when they are discovered early.
            An estimated 50% of shunts fail within two years and 20-50% of ETVs close up within five years. Either treatment can fail at any time. Infections are less common, but still not infrequent. Be informed and vigilant. Be prepared to act quickly. Mere hours can mean the difference between a resolvable complication and brain damage or even death, especially in children.
            Shunt malfunction is usually a problem with a partial or complete blockage of the shunt. The fluid backs up from the site of the obstruction and, if the blockage is not corrected, almost always results in recurrent symptoms of hydrocephalus. Shunt obstruction can occur in any part of the shunt. Most commonly in children, the ventricular catheter (the one in the brain) becomes obstructed by tissue from the choroid plexus or ventricles. In adults it is more often the distal catheter (the one that drains the fluid to another part of the body) that becomes blocked. The catheters or the valve may become blocked with blood cells or bacteria. Shunts are very durable, but the components of the shunt can become disengaged or fractured as a result of wear or as a child grows, and occasionally they move from where they originally werei placed. More rarely, a valve will fail because of mechanical malfunction.
            Shunt infection usually is caused by a person’s own bacterial organisms; it is not acquired from exposure to other children or adults who are ill. The most common organism to produce infection is Staphylococcus Epidermidis, which is normally found on the surface of the person’s skin and in the sweat glands and hair follicles deep within the skin. Infections of this type are most likely to occur one to three months after surgery but may occur up to six months after the placement of a shunt. People with ventriculo-peritoneal (VP) shunts are at risk of developing a shunt infection secondary to abdominal infection, whereas people with ventriculo-atrial (VA) shunts may develop generalized infection, which can quickly become serious. In either case, the shunt infection must be treated immediately to avoid life-threatening illness or possible brain damage.
            Other Shunt Complications may include the shunt system draining fluid at the wrong rate. Overdrainage of the ventricles can cause the ventricle to decrease in size to the point where the brain and its meninges pull away from the skull or the ventricles become like slits. If blood from broken vessels in the meninges becomes trapped between the brain and skull, resulting in a subdural hematoma, further surgery is required. This is most common in older adults with normal pressure hydrocephalus (NPH). Slit-like ventricles, sometimes called slit-ventricle syndrome (SVS), are most commonly a problem in young adults who have been shunted since childhood. Underdrainage of the ventricles can fail to relieve the symptoms of hydrocephalus. To restore a balanced flow of CSF it may be necessary to place a new shunt containing a more appropriate pressure valve. For those who have externally adjustable or programmable valves, the balance of flow can often be restored by re-setting the opening pressure.

            Thursday, October 20, 2011

            4th person arrester in Philly dungon case

            $1M Bail for Daughter of 'Ringleader' in Mentally Disabled Kidnapping Scam

            The 32-year-old daughter of alleged ringleader Linda Ann Weston is the fourth person arrested in the case of the kidnapping and imprisonment of mentally disabled people

            By Teresa Masterson
            | Thursday, Oct 20, 2011 | Updated 8:14 AM EDT
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            Police arrested a fourth person in the disturbing case of a house of horrors in Northeast Philadelphia.
            NBCPhiladelphia.com - Tim Furlong
            Police arrested a fourth person in the disturbing case of a house of horrors in Northeast Philadelphia.
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            The adult daughter of the convicted murderer who allegedly orchestrated the kidnapping and imprisonment of mentally-disabled adults for profit
            Jean McIntosh, 32, daughter of 51-year-old Linda Ann Weston, was arrested early Wednesday on charges of kidnapping, conspiracy, unlawful restraint, simple assault, burglary, and other related charges.
            McIntosh is a co-conspirator in a horrific case in which four mentally disabled people were found locked up in a tiny boiler room in a Philadelphia sub-basement, allegedly so their captors could cash their Social Security checks, the DA says.
            McIntosh is the fourth person to be arrested in the case, along with her mother, Gregory Thomas, 47, and Eddie Wright, 50.
            It was the landlord of the apartment building at 4724 Longshore Avenue in the Tacony section of the city who discovered the four people, who all have the mental ability of a 10-year-old, in a foul-smelling room that was so small an average adult would be unable to stand up straight in the room.
            Multimedia
            Inside the Tacony 'Dungeon'
            Kids Involved in Dungeon Case
            More Multimedia
            Police then found dozens of pieces of identification and power of attorney documents for the four victims, pointing to a wide-range fraud scheme.
            The bizarre case became more complicated Tuesday when six children and four teenagers were removed from the care of Weston, all having signs of abuse and malnutrition.
            Among the children and teenagers taken away was Weston’s niece, 19-year-old Beatrice Weston, who was reported missing in 2009.
            “This is a very complicated case," Police Commissioner Charles H. Ramsey told the Inquirer Tuesday night. "This is a very sad story. It makes no sense. When you look at the kids, the psychological trauma is pretty apparent. It's some of the worst things I've ever experienced."
            Reports from the 80s state that Weston and her sister, Venus Weston, beat Ramos with a hammer, tied him up in the closet, fed him only three times over two months until he died because he refused to pay child support for her sister’s unborn child. Weston only served eight years for the crime.
            "This is a long-term case. It'll take some time," Ramsey said. "I wouldn't be surprised if we find other things along the way."

            This is just my opinion but if she had already been convicted of killing her boyfriend. Why would she 



            be out on the streets again?



            I think this is a really good example how our system is failing us as disabled citizens. It does not make me feel very safe as a disabled single female.



            Tuesday, October 18, 2011

            4 mentaly disabled adults found in basement

            A landlord was investigating a tenant for having a dog in there basement. She enters the basement to find there is no lights. Thinking there is a problem with circuit breakers she goes to the electrical box to flip the switch. Apparently the light bulbs had been removed.

            But when she get down to the boiler area she finds 4 people huddle together. One chained to the boiler. They were in a small room 10x15 dark with a bucket to use for a bathroom.

            http://www.cbc.ca/news/world/story/2011/10/17/philadephia-basement-handicapped-theft-scam.html

            Saturday, October 15, 2011

            Diet is doing more than I expcted

            Exactly a year ago I started a as a support person in a weight loss program I thought it would be a really great chance for me to learn more about my own diet and how I could improve. I also needed to help my friend with their weight loss journey.



            It is rebound diets that cause so many of us problems. But I feel like I’m truly onto a life that I can live for the rest of my life. I’m not dieting. If I want to eat something I eat it. I don’t count calories. I’m not spending a lot of money on the pricy frozen meals in the grocery store. I have not got a pricy trainer at the trendy gym wearing the short shorts…LOL!! BUT if I could still sport them I might wear them…

            Something you may not realize about me is I have been sick since 2002 and in and out of the hospital. So to my new readers this is the reason for my need to diet. While cleaning up my diet something amazing has happened. Many of my hydrocephalus friends have heard me talk about fatigue for a very long time. I have had such a very hard time with it and worry about others having problems from fatigue.

            The fatigue is becoming less of a problem every day. I can compare my post from a year ago it was all I could do to get the energy to just walk to the walk through the house.

            In nearly a year now I have lost close to 30 pounds. It has all been from adding protein and continuing water aerobics and working out in the gym.

            I want to explain about my protein diet a bit better. I have added protein shakes to my diet. (No they are not Slim Fast) sometimes I will drink one. Sometimes I will drink two. But if I want something good to eat I still eat.

            Protein is the key that has helped me to loose. I like either Whey or Soy protein.  They come in any flavor you can think of from fruit flavors to flavors like chocolate, strawberry and vanilla. I even will take a vanilla shake and add fruit to it.

            They work great to keep you from feeling hungry. The possibilities are endless. You can try something different everyday.