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GReggzz73262 karma

My girlfriend of almost 9 years also has hydrocephalus. She was given her shunt when she was a baby, Ben Carson actually was the surgeon who had put it in. She has had 20 brain surgeries in the past 5 years. Have you had any issues with your shunt over draining? That was a big problem with my girlfriend, but had gone undiagnosed for years, leaving many ER doctors scratching their heads trying to find a reason for her incredibly painful migraines. This went on until I did a lot of research, suggested her shunt was malfunctioning and prompting her to have a different neurosurgeon run tests to check the drainage rate.

Have you had any instances where you knew there was something wrong but your doctors couldn't find a problem?

GReggzz73228 karma

Fuck dude, please answer this. I talked to you one the phone about 6 years ago. Your sister was at the Point Pleasant boardwalk and I was working the stands and her friends asked me to give her a free stuffed animal. I asked why should I do that, then they told me she was your sister. I said I would do it, but only if she could prove it was true. So she called you and gave me the phone. I asked what the name of the tattoo on your arm was in Pete & Pete and you promptly answered "Putunia", I knew it was you. I told you I was a huge fan and loved Pete & Pete, it was by far one of the best shows Nickelodeon ever produced. You said something like "Aww, thanks man". Your sister got that stuffed animal and I would do it again in a minute.

GReggzz73223 karma

Thank you for answering. She does have slit ventricle syndrome, and does have a neuro-optomologist who can measure CSF pressure via eye pressure. Now we're dealing with what is most likely adhesions in her abdominal area. Ugh!

Best of luck and thanks for posting, it's great to see people spreading hydrocephalus awareness!

GReggzz7324 karma

Um, I'm not a eye doctor, but I asked my eye doctor about wearing my monthly contacts for up to 2 and a half months and she told me that "as long as you clean them, take them out every night before you go to bed and don't wear them if you notice any rips, tears or if your eye keeps getting irritated, you have nothing to worry about. I know contacts are expensive, just be careful about it and you can turn a 6 month supply into a year supply" basically the same thing that OP said, and I'm in the states. My eye doctor is one of the largest practiced in my area. She diagnosed me with a slight skin disorder that no other optometrist noticed before, so, she knows her shit.

GReggzz7323 karma

Hey, my GF has Hydrocephalus and she has gone through a lot and I have done a ton of research. If you have any questions, PM me. I say that because my GF has had a shunt since she was a child, it was put in by Ben Carson at John Hopkins. She had it revised when she was 14 and started experiencing terrible pain attacks for years and no one knew what was wrong with her. Doctors and her parents thought she was making it up and was crazy, but after holding her so many nights while she writhed in agony, I decided to take charge and did some research. Her symptoms correlated with shunt over drainage, she went to a neurologist, they ran tests and it turned out to be true. She was in the hospital from April 2012 until June after having multiple surgeries and a MSRA infection of her CSF. She is better now but still trying to piece her life back together.