Successful Surgical Procedure on Infant to Treat Hydrocephalus and Extreme Macrocephaly
Posted by amandagarzon on December 31, 2012 · 2 Comments
Neurosurgeons at All Children’s Hospital/Johns Hopkins Medicine and the University of South Florida Morsani College of Medicine successfully performed back to back surgeries on an infant within the first week of life to treat hydrocephalus and extreme macrocephaly. This is the first reported case of cranial fixation in such a young child with extreme hydrocephalus.
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Hi. I live on an island in the Indian Ocean named Mauritius. My sister was diagnosed with hydrocephalus before she was born. After her birth, she underwent a brain surgery and a shunt was placed in the right side of her brain, going through her stomach, just below her chest area, on the right. Later she also underwent a surgery, in this case, in her right foot near her ankle since her right foot could not be placed properly on the ground..She is fifteen years old today and she has the brain of the child.. The issue is that she cannot walk. She is weak and cannot stand on her own feet..she cannot maintain an equilibrium. She cannot stand straight. It seems to me that the left side of her body functions better than the right side where they performed the brain surgery. I wonder whether the operation was well performed..because the stories I read here show that irrespective of age, people with hydrocephalus are living normal lives. Please help.
We’re sorry your sister is facing so many challenges. As a caregiver and loved one, it is natural to question whether the surgery was performed well. The range of physical and cognitive disabilities people with hydrocephalus face is very wide. There are individuals that will and are leading relatively challenge-free lives, there are individuals that struggle with significant challenges, and then everyone in between. The outcome depends on many factors including the cause of the hydrocephalus – was it secondary to another neurological condition, was it due to a brain injury, is it congenital due to a malformation of the brain in utero, among other questions. It is also hard to determine the extent of the injury on the brain from either the hydrocephalus or a secondary or underlying condition which could be causing more acute challenges for your sister. In other words, it may not necessarily be tied to the surgery. I don’t know if it’s possible but you could ask your sister’s doctor what the possible cause of the hydrocephalus could be and if that cause is tied to some of her challenges. Living on an island gives you limited options to seek a second opinion on her developmental and physical challenges and any possible treatment options for her that might help. You can, however, call a neurosurgeon in another country and see if they would be willing to review her records and offer an opinion on her current condition and any programs, therapies, or treatments that might help her with her balance issues. Just know that there will probably be a fee associated with that. We wish we could give you the golden answer to the why or how it could get better. Continue to be your sister’s advocate and ask the questions that will give you the answers you need. You can also search for key terms of some of the challenges your sister faces in our Hydrocephalus Resource Library and see if any useful articles come up that might help you find more information. We are always available to help, as well.