Hydrocephalus?

Re: Hydrocephalus?

• jojoladeeena member

  June 2015

  My sister was born with it. They placed a device in behind her ear to drain extra fluid from her brain out when she was 1 day old. She has a weaker leg & arm & some vision loss too. All in all though she is very smart, active, and independent & now 26 years old. I know some cases can get pretty severe where people can be wheelchair bound, but the fact that they caught it early will help with treatment and hopefully they can prevent a lot of damage. Ultrasounds were rare when my mom was pregnant with her so they had no idea until she was born.

  Report1 Reply
• Loading the player...
• Elysia21 member

  June 2015

  Oh wow, well that is a very positive outcome! Thank you so much for sharing.. My friend is quite alarmed because the doctors have told her the worst case scenarios and none of the good. So very glad your sister has been able to lead a regular life with her condition. I appreciate it very much. Any info we can gather that is not from Google is certainly reassuring.
  
  Thanks again

  Report0 Reply
• alligirl1119 member

  June 2015

  My daughter was born with hydrocephalus back in 2009, she also has a VP shunt placed behind her ear it isn't noticeable at all. She got some therapy during her first year to make sure she was developing and hitting all of her milestones, I'm glad to say my princess has always been right on track thank god. She's had a couple of revisional surgerys and gets occasional headaches as well but nothing too bad. Feel free to message me or have your friend if she has any questions or needs any support. Best of luck to her and her baby! ❤️

  Report0 Reply
• saybaby97 member

  June 2015

  My nephew was born with hydrocephalus that they later more specifically diagnosed as an arachnoid cysr.  They consulted many pediatric neurologists, and ultimately determined not to do anything (no shunt or fenestration) and watch it over time.  My nephew  is now 12, and while he has mild learning differences that require he is on an IEP, he has no other symptoms and is a happy, healthy, active kid.  

  
  

  His parents were told many worst-case scenarios as well, and were quite worried.  But there is a wide spectrum of results possible here, so while its hard not to imagine the worst, have faith that there are relatively benign outcomes as well.  Incidentally, my sister-in-law discovered at the age of maybe 40, that she has an arachnoid cyst too and had never known it!  She is a smart, professional working mother and an Ironman!

  Report0 Reply