Just some ramblings of mine :)

     I just wanted to write a little about some of the things I've been reading lately, and some of the thoughts I've been having of about my medical conditions.
     I have been reading a lot of posts in hydrocephalus and Dandy Walker groups lately trying to find more info about the conditions and see what other people's experiences have been like since I have only ever met two people with shunts that I know of (and one was a baby who and I am no longer in contact with his mother) and have never met anyone with DWS. I was surprised at just how many people there are out there that suffer from these conditions, especially hydrocephalus in general. I have yet to look for a group about occipital encephaloceles/meningoceles (the other condition I was born with. See my first entry in this blog for more details.) but I have done general research on the web about it.
     Through my research I have found that most people with these conditions separately are usually at least somewhat mentally and/or physically handicapped. Many of them can't walk (or can't walk very well), can only talk a little or not at all, and have many other problems associated with the disorder such as seizures, Multiple Sclerosis, hydrocephalus, etc. Not too many of them have grown up to live full lives like I have. And that is people who only suffer from one of my conditions. It is apparently very rare (though not completely unheard of) for someone to have both DWS and an occipital encephalocele at the same time. I can't really find much info on what life is like for people like me who are born with both disorders. I'm guessing not so good since it seems that just having one of these disorders is usually severely debilitating, or deadly. I'm starting to think that I am extremely unique in having both of these conditions and still being able to be a high functioning person.
     I have read a lot about experiences that people have had with having children with hydrocephalus. It seems like the vast majority of the people in these groups are parents of children with these disorders I guess because the people who actually have the disorder are usually incapable of representing themselves and many times don't even live to adulthood. I have been trying to help out some of these parents who have so many questions and concerns about their child's disorder. I am hoping that it may help them to know what life has been like for me living with these disorders and to know what kind of symptoms they should be looking out for in their own child. I don't want anyone to have to suffer needlessly like I did, so I am trying to spread awareness of the symptoms people in the hydrocephalus community should be looking out for that may indicate something is wrong with their shunt. I do hope I have been of some help to someone!
     Unfortunately, in my readings I have also discovered that sometimes headaches similar to the ones I once had may just be a part of living with hydro, and may not always be able to be fixed like mine were. I have tried to help people suffering from these headaches by sharing my experience with them, but I'm starting to think that in most cases their situation can't be helped. Even if their shunt is malfunctioning like mine was, it seems that if they can't prove to their doctor that it is malfunctioning, then nothing will get done about it. I know that kind of frustration. I wish I could help these people more but I don't really know how. I feel like I just got very lucky that my doctors finally found evidence that my shunt was malfunctioning and so were willing to replace it. Other people don't seem to be that lucky. If their shunt appears to be working fine then doctors won't replace it. It also seems that with some people, no matter how many shunt revisions they get, they still have the headaches. That must mean that either the headaches have nothing to do with the shunt, or that the shunt just isn't being effective in treating the headaches for whatever reason. It has also occurred to me that shunts may not be 100% effective 100% of the time in treating hydrocephalus. I'm starting to get the impression that it is actually normal to get headaches once in a while when you have a shunt because sometimes the shunt just can't control the pressure levels in the brain as much as it should. Many people have said and I agree, that no shunt is perfect. A shunt is probably the best treatment for most people with hydro, but it is by no means a cure. I do still get mild headaches once in a while and when I do, I always wonder if it is related to my hydro. I consider myself relatively headache free since now my headaches are few and far between and are nothing compared to the headaches I used to get when my old shunt was malfunctioning. For a while, I thought the headaches I have been getting off and on since my last surgery have been just "normal" headaches like everyone else gets on occasion.  But now from what I have been reading about other people's experiences with shunts, I think it probably is my shunt. I do not believe my shunt is having a major malfunction, because if it was my symptoms should be much worse. It just seems that sometimes I have a "bad shunt day" in which maybe my shunt isn't working 100%. I will talk to my NS the next time I go for a checkup but I'm pretty sure nothing can be done about it. I'm not worried about it though, because these mild, barely even noticeable headaches aren't really affecting my quality of life very much.
     To anyone who is reading this who has any of the conditions I have discussed hear, know that you are not alone. And to the parents of children with these disorders, I would like to say that I truly admire your courage and your strength. As a parent myself, I know that raising a child is not easy as it is, even if you have a healthy child. But I can only imagine what it is like to have a child with such a severe illness. I feel bad that my parents had to go through that with me. I know it must be hell not knowing if your child will have a full life, or if they will even survive infancy. It takes a lot of guts to love a child so much when you know that you could lose them at any time. I know having grown up with these conditions myself, that the love, support, and dedication of family does make all the difference in the world.