Friday, March 21, 2014

Outcomes of Hydrocephalus




I'm not writing this claiming to be in the medical profession at all, and any research I do is not scientific in any way. I'm writing this from the view point of someone who personally has Hydrocephalus and have spoken to many others with the same condition via social networking or in a few occasions in person. Any research I do is done by browsing through articles online, and is usually for this blog.

The outcome for people with Hydrocephalus varies from not being independent at all to living normal enough lives. The outcome for people with Congenital Hydrocephalus growing old is still pretty much unknown territory because the current treatment has only been around 1950's and 60's. So the oldest survivors are only in their 40's and 50's. It was very unknown for people with Hydrocephalus around that time what their futures would be like because they were the first generation. The problem is and the reason I'm writing this post is that at least with some infants and children being diagnosed with Hydrocephalus is that they are still being given little hope for a good long term outcome.

It's really hard or impossible to know the outcome right away or in childhood, and again there are some that will never be independent, almost at all in some cases. However there are many people with Hydrocephalus who have been able to accomplish things like having a family of their own, working a good enough job to support themselves financially, and going to school. There are people I've met on here that has not only accomplished higher education but have double majors or have gotten their master's degree. Learning disabilities but a lot of the time it can be overcome. It depends on where people are at cognitively, but it also depends on surgeries and how they end up affecting the person. There's some of us that deal with pain on a regular basis, and that can or cannot stop us from having a certain long term outcome.

Personally I struggled in school to the point where except for getting a office certificate which took me several months at a Community college when I was waiting to get my high school diploma, I decided to not go to College or at least not right away. Things came up including shunt problems and I haven't had the chance to go back but I still hope to eventually. What I have been able to do is keep a job for several years so far, and work up to a position where even if it's not part time I'm making a liveable wage doing it. I'm a Produce clerk for a Kroger division and I have been for 3 years. There's a lot of heavy lifting which I most likely won't be able to do at some point, but if the time comes that I'll need to switch positions to a less physically demanding one I'll be able to do that.

Thanks for reading, I hope that I accomplished my goal and encourage someone by this post. Below are some links that will hopefully help people further. If you want know more about my personal experiences there are labels that will bring you to other posts I've written about the subject. You can use the labels on this post to bring you to posts about the same subject.

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

http://www.hydroassoc.org/

http://www.hydrocephaluskids.org/wordpress/

http://projectbraindrain.org/

You can contact me easily via the social networking pages for a domain name I share with a friend "gotshunt.com".

https://www.facebook.com/gotshunt?ref=hl

https://twitter.com/gotshunt

http://gotshunt.tumblr.com/


1 comment:

  1. Yes, you make some good points here about outcomes. I am 25 years old, have a VP shunt live in Edinburgh and have had about 13 revisions in my life time. I was first diagnosed at 4 months old. Hydrocephalus certainly disrupted my high school education and my exams and I had a really nasty experience nine years ago when my shunt failed but I feel very uncomfortable talking about my past experiences. I presented an E poster in Athens last year which you can see on my twitter account page. I'm still thinking what to do next in terms of raising awareness and am trying to raise money to go to the ISHCSF conference in Bristol in September.

    Alexander

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