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Hydrocephalus Awarness
Posted by swimgirl16 to Disease/Illness, Sep 8, 2009 3:09pm
I have a condition called Hydrocephalus. Its a fairly common disorder, but a lot of people do not know anything about it. Even neurosurgeons do not know about the latest treatments to treat the condition. Some doctors often times refuse to help complicated patients like me. I almost died as a result of a doctor that didn't know how to treat my complications. Doctors and the general public do not know what sort of complications can occur with it.When they learn that you have it, they think that you have emotional or mental illness, or that you are stupid. I was told growing up that would never be smart enough to graduate Highschool, let alone go to College. Now I am a college graduate. There needs to be a show on this desperately to dispell myths associated with the condition.
n95m00o05
Sep 20, 2009 12:57pm
I am an adult with moderate to severe Hydrocephalus and absence of the corpus collusum (sp??) that was caused by a condition called Dandy Walker Malformation. My condition wasn't discovered until I was 30 years old and pregnant with my 2nd child. I have never been shunted or operated on b/c the neurosurgeon was afraid that it would cause me more harm than good since I have been compensating for so long. I recently had neuropsychological testing done and it was discovered the I have ADD, Learning Disabilities and an Anixiety Disorder. Recently I was promoted to a new position but was later fired due to my employer not willing to accomodate my disabilityI (the accomodation I requested was more time to learn the complexities of the job) I earned a MA degree in 2006 and have been told that I never should have been able to attain the level of formal education I have. So I consider myself to be very lucky in comparison
kizzie
Sep 21, 2009 4:09pm
I was diagnosed with Hydrocephalus (Aqueductal Stenosis) when I was 28. I have had three shunts about 3 years ago my shunt was removed because of all the problems I was having with it and I had a third ventriculosmy performed. Since then I have had nothing but problems. I have severe headaches, I am always dizzy and off balance and I have a hard time keeping my thoughts straight. I have seen so many doctor's and taken so many medications but still I cant find any relief for my symptons. Doctor's don't seem to know what to do with me and it is very frustrating not being able to find answers. I had to stop working because of all the trouble that I am having. I think that there should be more education on this condition it would really help a lot of people.
aprilmay1
Oct 1, 2009 9:38am
My story would fill this entire page, On all my surgeries and condotions/complications due to Hydrocephalus. I have had 19 surgeries and I have had infection. subdurohematoma. I have occiptal (sp) nerve damage. I have a metal clip left in me from the surgoen not taken it out. that I discovered on my own, the NS, told me only told me after I found out, by having a sinus x-ray, that he could not get it out, that it was use to clamp off a vein to keep me from bleeding but then was not able to reach and saftly remove it. I have sevral other conditoins due to the Hydrocephalus. I copies of my Mri/sT scans/some of my medical records. I agree there need s to be show more reseach and more help with those of us suffering every day with this medical condition. I does effect our lifes everyday to what agree is different for all of us. but the thisgs siad in all these post our true. There are so many more things we esach could share and so many more stories not posted. It is something Ihope you on thiis show will take a strong look at and put it on your show or find someone whom is willing to help us and get the truth told and the help for all of us out there who need and deserve answers/medical help and help with life in general that has cause us NOT TO BE sociiety NORMAL but normal for us. There are some who suffer little some who have suffer more than I . Some can work but can't get or keep jobs. some can't work at all due to the pain. Some get to go to college others don't while yes this is true in society that in all walks of life it can or does happen. We just want our story/life to be told and to get the help and jobs we deserve!! Thank-You!
Arachnoidcyst1dotcom
Jan 19, 2010 9:00am
I also have hydrocephalus in association with my Arachnoid Cyst. I founded Arachnoid Cyst Awareness in 2003 after having over 15 surgeries, including 11 brain surgeries, for the complications my cyst and hydrocephalus caused. I was fitted with many shunts, at one point I had 2 at the same time: one in my cyst, and one in my ventricles. Even though the hydrocephalus portion of my problems has always been taken seriously, there never seems to be the right kind of cure, unless you consider multiple surgeries on top of some more surgeries a cure. Even after all that my shunt either over drains or under drains and I sometimes need constant monitoring. It can never be settled! I do agree with swimgirl16, that sometimes you find doctors who are not educated on hydrocephalus properly, and that is a disgrace since it is a common disorder. Some doctors in my area never even heard of a shunt, but if they have they do not know how they work exactly. It is a very scary thing to be having a shunt malfunction or infection and not know where to turn!