Hydrocephalus and college: dreaming the possible dream (Part 1 of 2)

Four (4) years ago I embarked on this dream journey and it has been an experience! As a favorite saying of mine goes, I "went into it with eyes open" and knew that it would be rough at times. Fortunately I had what I think are the two critical components to my success: 1) The personal chutzpah that said I would succeed (and that failure IS NOT an option); and 2) The strong support network that swoops in and keeps me encouraged when I am tired and feel like I lack the endurance to keep on. Oh, and one more thing, when I graduated from high school thirty-four (34) years ago I received an award for my combination of academic excellence and personality. When I start to tire, I just pull out the remarks written by my guidance counselor and that re-ignites the flame that pushes me forward.

I. Setting the stage: before you go

When you begin considering an academic career, there are several factors that usually come into play. Here are some issues to consider before getting too deep in the application process:

Location is an important consideration because, at least for some, staying closer to home (and family) is the safer, more comfortable option. For others, going away to college in another city - or state - is an important step on the path toward independence. When that is the case, creating a balance between your desires and your parent's worries is crucial. The key to creating this balance can be achieved by a frank and open dialogue that addresses both.

Special services are an important consideration as you are investigating which college you would prefer to attend. Going in with a knowledge of the services available by the college or university of your choice can prove invaluable later down the road.

II. Medical considerations

Wherever you choose to go to college, it is important to have all of your medical information close at hand and in a safe location be it a file folder, notebook, or a binder. This is imperative because it is one of your first steps toward complete independence. This information should include: 1) Contact information for your all of your doctors (it should include their phone number(s), address, and e-mail address); 2) A copy of your most recent CT scan or MRI; 3) Operative notes as relevant (these will provide insight into the type of shunt you have and its settings as well as if it's programmable or adjustable); 4) Complete insurance information including a photocopy of both the front and back of your insurance card; 5) A listing of all medications (both prescription and non-prescription) that you are currently taking; and 6) Information on all known allergies.

Every young adult - or anyone with hydrocephalus for that matter - should wear either a medical alert bracelet or necklace that clearly states that they have shunted hydrocephalus or hydrocephalus that is treated by an endoscopic third-ventriculostomy (ETV).

For students who opt to attend college away from home, they need to put into place a plan for local care in the event of a emergency. The first step in this process is to have your regular neurosurgeon recommend a neurosurgeon near the college you plan to attend. At the beginning of the school year, arrange for a visit with your newly selected neurosurgeon and make sure he/she has received a copy of your medical records.

Additional information:College and hydrocephalus