misconceptions about shunts (that have come up in some recent conversations)

Hydrocephalus has always affected me in different ways, but it wasn't until I started to have my problems with the shunt itself that I started to talk about it. Up until a few years ago,the majority of the time that I mentioned it was on a need to know basis. Even then there were times where I feel I should have mentioned to people that was in the care of me, as a kid and especially when I was a teenager. When I started getting headaches a lot more often was when I decided not to say quiet about it. I talk about on Facebook once in a while, and I post a link to my blog there whenever I write something new. I've also at least tried to explain my condition when to my department heads,and whenever it's brought up at work. There's some parts where it seems to really hard to understand, no matter how much they want to. The most common is probably has to do with shunts. I'm writing this because I'll be posting it on my Facebook, where some of those people that are confused with the subject will be able to read this. Also if it's brought up at work,I'll be able to direct people to this blog post.

There are different kinds of shunts,and not all of them are used for Hydrocephalus. There are some that are used for heart or liver problems instead. But most commonly it's used for Hydrocephalus or other similar neurological disorders. Shunts are a valve and a catheter that drains cerebrospinal fluid from the brain to another part of the body,when the person's body cannot do this by itself. The drain usually ends in the peritoneal cavity, but with some people it drains to the heart or other organs. The shunt is usually placed in or around the skull going into the brain,but underneath the person's skin. The result is that it's usually visible,but it might not always be noticed by someone who doesn't know anything about it or doesn't know what to look for. Shunts could also be programmable or a fixed valve. A fixed valve is one that is placed at some point, but then there's no way of controlling it without surgery. With the programmable shunt the neurosurgeon can control the settings without needing to do any kind of surgery. Both kinds of shunts has it's own sets of risks and complications. Mine is a fixed valve, because the programmables weren't available until about a decade later. In some cases surgery isn't necessary but it's really rare. Then something that is a option for a limited amount of people is Endoscopic Third Ventriculostomy, where a hole is made in the wall of the Third Ventriculostomy so the fluid can be drained that way. But that options fails often as well, because the hole could close itself up.

What people seem to not understand is my shunt and why it's lasted so long. Mine was placed on September 15th,1987 and at least for now it has lasted me 26 years. For the first 22 years, it rarely even bothered me and the times it only did bother me enough to be noticeable a handful of times. When it did start bothering me  I went to the hospital for during a period of several months and both times I was told the shunt was working fine and it was probably something else. I was sent to the neurologist that I ended up stopped seeing when I was trying to transition from working two jobs to just one part time job.

It's very rare for a shunt to last as long as mine has, but it has nothing to do with a shelf life. There actually isn't any for shunts,and I've met others that has had the same shunt for years or even decades longer than I have, and most of them have very little or no problems with it still. So even if one of the reasons that I'm trouble with mine because it's old, that doesn't mean that's it's past a certain shelf life, because others with older shunts would be having the same problems. It's also pretty common for people to have constant problems with shunts, that are a lot newer. Also not all problems with shunts can't always be fixed by surgery, it sucks but it's just something that a lot of people have to deal with on a daily basis. 

The reason that it's a rare case, is because half of all shunts malfunction in some way during the first two years. Not because of a "shelf life" but because they either break, become infected, or become blocked. I've had people ask or tell me that I should try to force my neurosurgeon or other doctors to replace my shunt just because it's "too old". The reason that I don't do this is because just because this shunt has lasted so long doesn't mean that the next one will. When I do need surgery I will be facing the normal statistics of the life span of shunts. There's a 50% chance that I will never have a shunt last for more than 2 years ever again and I'll like to avoid that until I get to the point where I need to have it replaced. This may be soon, but this last something that people have been telling me since I started talking about it more. 

I covered a couple of the main misconceptions of shunts, specifically mine or others that has lasted a long period of time. If you want me to add anything else or have any questions, please feel free to contact me. If there's anything that needs to be talked about on this subject than I'll write about this subject again in the near future. Thanks for reading.

Media views on Hydrocephalus:Chi Cheng (of Deftones)

This is the first time I've written about someone that has recently passed away. I had found some info about his brain injury, and I was trying to find more when he passed away on April 13th.I decided to put off writing about him because I didn't want it to seem like I was writing about him just to get views for my blog because of how many people must have been looking him up that week. While I have some other ideas for what I want to write about, none of them is anything that I would have been able to finish on time.

Chi Cheng was the original bassist for the alternative metal band Deftones, and played with them for two decades until his accident. Chi was seriously injured in a automobile accident in November of 2008. He had spent the last four and a half years slowly recovering. He had several surgeries and after being in a coma, he was recovering at home and was able to at least move his limbs and he was starting to be able to speak. He passed on April 13th when his heart stopped after being rushed to the hospital.

I had heard about his accident, but I didn't think about what the result of his brain injury could have been. Recently I saw that he had surgery to replace a bone flap in his skull that was removed shortly after his accident. What caught my attention about this was that this is the same surgery that former state rep Gabrielle Giffords had and she was later had a shunt placed and diagnosed with Hydrocephalus. I decided to look more into, and I never found anything about him ever been diagnosed with Hydrocephalus however he did have surgery that treats it. The surgery he had is a ventriculostomy (sometimes also called or referred to as a ETV, or a Endoscopic Third Ventriculostomy).

I don't want to claim that he had Hydrocephalus, but the surgeries he had and the descriptions of what was going on makes it seem that way. I don't know why it may have never been brought up, but it's common that people who to be treated for the condition without finding out what it's actually called. What I do want to do  is use this post to raise awareness for people who may have gone through the same but was never diagnosed. I hope that I can encourage those people to look into it, and find the help that they wouldn't be able to if they didn't have a name for it.

I also want to use this post to encourage people to donate or at least bring awareness to a cause. The "one love for Chi" site was put up soon after his accident by a Deftones fan, and posted updates on a regular basis on Chi. You can even help her out by going to her merch page or leaving a donation on her own page. All the money earned goes to whatever needs Chi's family has now that he has passed, and also the Chi Ling Cheng Special Needs Fund. Thanks for reading :)

The first link is to the "one love for Chi" site

http://oneloveforchi.com/

The second link is the Hydrocephalus association ETV Fact sheet,so the procedure that he had can be  better understood.

http://www.nhs.uk/conditions/chiari-malformation/Documents/ETV.pdf

The third is my source that I used that talks about the second procedure that Chi had,the first being the bone flap operation he had.

http://oneloveforchi.com/chi-in-neuro-icu/

history of hydrocephalus treatment and a hope for the future

I've tried to make it a point to write at least once a week,so I apologize for not writing in during the last couple weeks.

Although there really hasn't been much improvement in treatment in the last sixty years for hydrocephalus there has been some.Other than in the eighties there has been some development in shunts since when they first came out with them.The main reason that it took until then is because they couldn't determine what was causing it exactly because they didn't have the technology  to find out.Then they didn't have the technology to find out someone has hydrocephalus before they were born until decades later.The first treatment they tried for hydrocephalus was ventricular punctures,and it didn't work because he thought that it had to do with the outside of the brain rather than inside it.In ancient greece they attempted to treat hydrocephalus by wrapping bark around the person's head and in trephined holes.Several other treatments were tried to during the last couple centuries before shunt technology.Many were not successful due to lack of knowledge on what hydrocephalus,but some were close to knowing what the cause and wasn't successful for other reasons.One interesting treatment had to do with leeches,because a 19th century doctor thought that hydrocephalus was a inflammatory disease/condition.


The main two people who invented the first and still current shunt valve were actually not doctors.One was a toolmaker and the other is a famous children's author.They both were fathers of a son who developed hydrocephalus in childhood,and they both had the determination and the knowledge to make something that would not only save their sons lives.The inventor of the shunt valve is John Holter.His son Charles was born with severe spina bifida and after meningitis he developed hydrocephalus.This was 1950 and at the time the hospital they went to had developed a shunt but they didn't have a valve for it.After a failed attempt which resulted in the death of a young boy,he made the first shunt.Although it didn't save his son the shunt is still in use today.His model is the "Spitz-Holter" shunt.

With the first development in shunt technology was partially made by a engineer and a neurosurgeon the person who decided to make it and also had a huge part in developing the shunt itself was Roald Dahl.If you don't know who he is,he's a children author who wrote books who would later be turned into popular movies like Charlie and the chocolate factory.Although shunt problems are common and the need for revisions is far more likely than they should be,it use to be alot worse.After Dahl's son's carriage was hit by a taxi he developed hydrocephalus.Back before he created his valve shunts would jam more often and be more likely to cause brain damage and blindness than it does now.He ended up inventing the valve system that's still in use and at least at the time metal discs were invloved.His valve is no longer in use and his son didn't need a shunt anymore by the time he finished it,but it did save or at least made life easier for several thousand children.Kind of off subject but Roal Dahl was one of my favorite authors as a kid,and still is.I think it's pretty cool that he has a part in why I was alive and well at that point in the first place.

There was developments for shunt technology in the decades to follow nothing really worth mentioning.In 1997/1998 the programmable shunt was developed and released.The purpose of it is so that not every problem doesn't have to involve surgery and a new shunt.Instead the person's neurosurgeon can change the setting.The prolem is that even though that it makes that part of a person's life the programmable is likely to cause other problems,and just isn't worth it.Personally because of not having any revisions yet and having a shunt about about a decade older than the first programmables I can't talk about it from personal experience.

The newest known developed is endoscopic third ventriculostomy.It involves making a small hole in the third ventricle of the brain so having a shunt isn't needed.Although it was used pre-shunt for several decades and it was successful and replaced by shunts.It's more effective now but it still fails,and only a small amount of people are able to have it done.I already know without needing to ask a neurosurgeon that I'm not one of them.

There has been small improvements in recent years but nothing that's really well known or at least known to be effective.There is hope though,before 30 years there was no foundations for hydrocephalus so other than what was funded by the government which has never been much.Now more than ever with foundations,and social media with have more of a chance to raise money or just awareness.There working on new developments rather or not we hear about it alot.The way we're going there's hope for a cure,thanks for reading :)

http://www.medscape.com/viewarticle/405733

http://en.wikipedia.org/wiki/John_Holter

http://en.wikipedia.org/wiki/Wade-Dahl-Till_valve

http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf