Are the surgeons you have seen experienced in pediatric surgery conditions? I ask because it sounds like they may not be as experienced with hydro as they should be. If they have no baseline on you, they have no clue how your brain is typically, when you're well, and how you are behaviorally and in terms of your personality. All of these things can change in the face of shunt failure, and if they don't understand that, you need a nsg who does.
Does that mean you should see the nsg every year? It depends on you and how well you know what changes can occur and how they affect you. Some can be subtle and gradual, and others may be sudden and brutal, depending on what the problem is. Consider asking the Hydrocephalus Assn for a referral. Tell them where you are, what type of hydro you have, and how far you're willing to travel. You can reach them at info@hydroassoc.org, www.hydroassoc.org, or 888-598-3789.
