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Post by ADMIN on Sept 18, 2006 14:13:02 GMT -5
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Post by lizard on Sept 18, 2006 15:16:22 GMT -5
Hey, everybody! Thanks, HF, for creating this board. I'm honored to mod it fer ya. My story spans nearly 40 years. I was dx'ed with hydro at 3 weeks old. After five surgeries by kindergarten, I went nearly 10 years with no problems with my shunt. Then it failed completely, and I had a VP done. I was not quite 14 yo. That was 26 years ago August 21--and I haven't had any since! There have been some things along the way. I had my first seizure--a grand mal--at 6 mo, and there have been about 22 or so since. Now I have good GM control with minimal med, but I still have clusters of simple partials a few times a year from things like foul weather, illness, whacky hormones, etc. I am also a college grad, I am (mostly ) happily married 16 years, mom to two awesome kids, and my greatest day-to-day challenge is balancing my med needs with my son's autism. I have learned to get the hang of it, but I do fear that the day may come when I'm not able to keep up. I hope that day never comes, and I try not to think about it, but it is an ongoing concern. So...who's next?? LIZARD
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Post by catwoman on Sept 18, 2006 16:05:31 GMT -5
I was born with congenital hydrocephalus due to a porencephalic cyst. As a result, I have a seizure disorder, short-term memory problems, learning disabilities for which I spent most of my school years in Special Education, as well as coordination and balance problems. Shortly before my last revision in 1994, I began having vision problems (double vision, some loss of color vision), as well as problems with walking, which were later diagnosed as the beginnings of spinal stenosis. I've had a couple of surgeries to correct the vision problem, and also have prisms in my glasses, but my vision still isn't 100%. Because of these problems, and because my seizures prevent me from driving, I am unable to work, and I am collecting Disability. I spend a lot of time on hydrocephalus forums and even created one of my own. I'm looking forward to meeting everybody! Gina
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Post by lizard on Sept 18, 2006 20:33:21 GMT -5
Catwoman!!!!!!! ;D Dang...she was one evil biotch! ;D Glad you found your way over here! LIZARD
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Post by coolangel26 on Sept 19, 2006 18:30:27 GMT -5
;D..I made it too... I was born with hydro,and was diagnosed with epilepsy,when I was nine.No revisions in twenty years..thankfully.
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Post by gossame1 on Sept 19, 2006 19:31:08 GMT -5
I'm here now as well! Here's my story (Post copied from another forum that I am a proud member of! Hello, My name is Brian Carotenuto. I was born with hydrocephalus due to Aqueductural Stenosis. I am 34 years old. My condition has been arrested since I was 7 years old. When I was younger, I had several shunt revisions over the years, the last revision back in '78, right before the hydrocephalus arrested. I have been able to overcome some obstacles that I had when I was younger. One of which was getting my driver's license, I froze up behind the wheel when I was in Driver's Ed in high school. The second thing was being able to find a job that I would be successful in doing. I am currently working at a thoroughbred racetrack here in Delaware, where I live. I have been working there since April '93. (As a side note, I was nominated for both the "Employee of the Year, and the "Employee of the Month" awards that are awarded throughout the year. (Hopefully this will give someone hope who is on the fence about being successful! Many thanks to the doctors up at CHOP for their caring and support over the years. Even though I am older, I still maintain contact with several of the doctors that have worked on me over the years.
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Post by lizard on Sept 19, 2006 21:08:34 GMT -5
Welcome, Kris and Brian! I'm so glad you two made it over here. Please help me spread the word that we're here. You can't have too many support forums, huh?? LIZARD, so glad to "see" ya here!
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Post by noahsgrandma on Sept 19, 2006 21:43:14 GMT -5
Hello, I'm Aggie grandmother to Noah, born 5-26-04 10 wks early, 2lbs 14ozs, gradeIII/IV brain hemmorage. Noah had 27 surgeries by 6 months, the docs said they could do no more for him and we should let him go, but he fought hard to survive so we fought for him, just after he turned 6 months was his last surgery, I forgot to mention that Noah has 3 shunts in his little head, now I am not talking revisions, he has 3 different shunts in his head. So proud of Noah, he is doing very well, his development is delayed but progressing every day. Noah is a Miracle many times over, one of my favorite stories is when he had his fenestation for a cyst in the 4th vent., we and the nurses were babing his IV for days knowing this surgery was to be done, the morning of the surgery about a half an hour before he was to go the IV went bad, no one could get another IV started so he went to Surgery without an IV, the anesthesiaoligist put the IV in a main artery in the groin, Noah lost 2X his body volume of blood in that surgery and the only reason he survived was the IV in the main artery which allowed the surgical staff to put the blood back in almost as fast as he lost it. So today Noah is a happy and healthy little boy, still has the 3 shunts and the same determination he had from the very beginning of his life, some eye issues and an uneasy stomach at times. Noah is the love of my life, and has taught me what is really important in life. Aggie
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Post by lizard on Sept 20, 2006 7:10:32 GMT -5
Welcome, Aggie! I am in complete awe over Noah's story. It upsets me in some ways to know that my generation went through everything we did so that kids today would have it so much easier, and yet, many of those kids have so much more to deal with. Noah is a true example of the will of the human spirit and what it can accomplish even under the worst of circumstances. Give him a big kiss for me. LIZARD
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