Welcome to My Blog about Living with Hydrocephalus

I've been living with hydrocephalus all my life. My hope is to bring awareness to other people about this disease. I hope you enjoy my blogs!

Tuesday, April 27, 2010

Research

Medical treatment happens over time. My paper will cover the history of diagnosing and treatment of hydrocephalus.

Aschoff, A., P. Kremer, B. Hashemi, and S. Kunze. "The Scientific History of Hydrocephalus and It's Treatment." Neuosurgical Review Oct. 1999: 67-93. Web. .

This article gives the history of when hydrocephalus was first described and how it was treated.



Hydrocephalus History - Search." Timeline Results for Hydrocephalus History. Web. 29 Apr. 2010. .

This article documents the history of hydrocephalus from 1550 to 2010.





Lifshutz, J., and W. Johnson. "History of Hydrocephalus and Its Treatments." Neurosurgical Focus 11.2 (2001). Web. .

This article is about how treatment of hydrocephalus has changed.



Fried, A., and M. Epstein. Childhood Hydrocephalus: Flinical Features, Treatment, and the Slit-Ventricle Syndrome. The Musella Foundation For Brain Tumor Research & Information, Inc. Web. 28 Apr. 2010. .

This article describes the treatment of hydrocephalus and different types of shunts.



United States. National Institute of Health. Ventriculoperitoneal Shunting. By D. Dugdale and D. Hoch. A.D.A.M., Inc., 21 Dec. 2009. Web. .

This article describes the treatment of hydrocephalus.






Photographs:

Najaflan, Alireza. Severe Hydrocephalus. Photograph. Gold Bamboo. Web. 21 Apr. 2010. .

Hydrocephalus. Photograph. Gold Bamboo. Web. 21 Apr. 2010. .

Hydrocephalus Baby Jpg. Photograph. Gold Bamboo. Web. .

Noguez, L. ""Alien Skeleton" Case Solved." Forgetomori. Web. 21 Apr. 2010.

Thursday, April 22, 2010

Goals for Living With Hydrocephalus

I have really enjoyed doing this blog. It has given me a chance to find out a lot more about what kinds of things can happen when people go through things with it. Sometimes I have a hard time trying to get things figured out so I can write it. I am hoping I can keep it up after the class is done.

I would like to get some other pictures in it. I have a lot of different ones that I've been looking at. I have a class that I just finished using pictures. I'm going to keep working on that and try to get some of those on the blog.

I have some other topics that I want to get into my blog. I will keep looking at things to try to get more information on it for different topics. I still want to get more things about hydrocephalus. I would like to show more people the blog after the class is done. I have told people about the blog so I would like to make sure they get to see it.

I want to write a book with everything that I've been through in my life. This class has helped me a lot to get things straight so I can work on that. It has gotten a lot easier for me to get words out the way I want to.

Sunday, April 11, 2010

Medical Professionals

There are several medical professionals that people with hydrocephalus have to see. If you are diagnosed with hydrocephalus, you will have to see a pediatrician when you are growing up. The pediatrician can help to find out if you're having any problems. Later on, you would have to visit a general physician when you're older. This person will check everything out to make sure you are healthy and everything is checking out.

A lot of times people with hydrocephalus will see a neurologist. That person will watch to see if you are having seizures. They also will watch to see how the body is working. When the neurologist tests for the seizures, they hook you up to an EEG which will determine how your brain waves are working.

You will akso have a neurosurgeon to watch how the shunt is working. They will do surgery to put a shunt in and any revisions if you start having problems. If you have to have surgery, you will have to meet with an anesthesiologist before the surgery, as well. That person will be in the surgery to keep the person asleep during the surgery. If you have local anesthesia, you are still awake but you are numb.

There are physician's assistants and nurses that can meet with you. They can follow your case so they can get things figured out if something's going on. Generally, the nurses and physician's assistants are very knowledgable on hydrocephalus in the department. I meet with the nurses to discuss my medicine pump and I call them first if I start having any sorts of problems.

Sometimes you will have to see occupational and physical therapists. They will find ways for you to be able to do things by yourself. They will come up with exercises to help get your body to work so you can keep the muscles relaxed. There are rehab doctors that can help watch if your having problems.

As you can see, there are several doctors you have to meet with if you are diagnosed with hydroceohalus. It can be frustrating at times but it is also comforting to know that there are so many people there to help you.

Wednesday, April 7, 2010

Support for Living with Hydrocephalus

Living with hydrocephalus has been challenging. I’ve had to go through so much when trying to figure out about my shunt and if it’s working or not. For example, when I’m not able to eat and my head hurts, my shunt might not be working. If they had better tools to diagnose it, it would be easier to figure out what’s going on. Right now, they don’t have a lot of good tests to tell if there’s something not working. They won’t see me until it’s really bad and a lot of times I end up in the emergency room. The doctors need to have better training to diagnose shunt failure. There needs to be more doctors that can treat shunt failure.

The government makes it hard to get good medical care if you have to cross state lines. You have to go through all the approvals to go out of state. If it’s an emergency you don’t have time to do that. It would help if families could help more without taking away other insurance. The government needs to have funding to do more research into treating hydrocephalus. They also need to have funding for mental health services. It is a common thing for people with disabilities to be depressed or have other problems with emotions.

Shunts are fairly new, so there haven't been a lot of studies on the effects of having shunts. There has been more information on learning problems that a lot of people with hydrocephalus have. The information has not gotten through to schools, so a lot of students do not get the help they need or are not diagnosed correctly. Most kids with hydrocephalus do not meet the criteria to get into special education.