Hydrocephalus: All You Ever Wanted or Needed to Know, for the Beginner to the Seasoned Veteran

I. Hydrocephalus 101: Types, Causes, and Other Classic Questions Answered
A. Communicating? Non-Communicating? What’s the Diff?
1. Types of Communicating Hydrocephalus
2. Types of Non-Communicating Hydrocephalus
3. The “Diff” and Why it Matters

B. How’d I Get This Thing? What Does It Mean For Me or My Child?
1. Causes of Various Types of Communicating Hydrocephalus
a. Infections
b. Too Much CSF?
c. Everything Else

2. Causes of Various Types of Non-Communicating Hydrocephalus
a. Congenital causes
1. Malformations of the brain
2. Congenital cysts and tumors
b. Acquired causes
1. Injuries
2. Stroke
3. Intraventricular Hemorrhage
4. Infections

II. This Thing Inside My Head: All About Shunts, from A to Z
A. Pressure valves and what they mean
B. Programmable? Non-Programmable? How to Know?
C. What’s in a name: Knowing the brand name of your shunt and why it matters

III. Do I Have to Have a Shunt?
A. Third Ven-somethingorother: Third Ventriculostomy for the selected few
B. Isn’t There a Pill? (Well…Sorta)
C. Other Alternative Treatments

IV. The First 20 Questions to ask the Neurosurgeon

V. Shunt Surgery: Everything You Should Know as a Parent or Patient
A. Getting Ready
B. The Big Day
C. Recovery

VI. Shunt Revisions: All You Need to Know: “Treatment” vs. “Cure”
A. “You Mean I’ll Need to Do This Again? Shunt Revisions: Signs and Symptoms
B. Moving Forward—Again
C. Complications
1. Infection
2. Catheter Migration
3. Pseudocyst

VII. Preemies with Hydrocephalus
VIII. Prenatal Diagnosis

IX. Seizures, Migraines, and Other Annoyances That Can Accompany Hydrocephalus
A. Seizures
1. Absence seizures
2. Simple Partial seizures
3. Complex Partial seizures
4. Grand Mal seizures
5. Other seizure types
B. Migraines
C. Ataxia and Balance Issues
D. Fine and Gross Motor Deficits
E. Cerebral Palsy
F. Slit/Non-compliant Ventricles

X. Vision Issues Associated with Hydrocephalus

XI. What Can I Do? What Can I Not Do?
A. The importance of taking care of yourself
B. Know your limits, ‘cause we’re all different in our own way
C. To live in fear is not living!

XII. Talking to Friends and Family About Hydrocephalus
A. So many questions, so little time: A crash course for loved ones
B. Where to turn when they “don’t get it”
C. What family and friends can do to help

XIII. When People Around You “Don’t Get It”

XIV. IFSPs, EIPs, IEPs, 504s, and other keys to education and services
A. Neuropsychological tests and other ways to determine weak areas in children with hydrocephalus
B. Common learning issues associated with pediatric hydrocephalus
C. What type of educational help does my child need?
D. 504 Plans: When you just need that extra bit of help

XV. Adult Onset Hydrocephalus
A. I’m 35 years old! How could I have this now? All About SHYMA (Discuss “Idiopathic”)
B. My dad was just diagnosed with this. I thought only babies had it! NPH 101

XVI. Growing Up with Hydrocephalus
A. Can I drive?
B. I want to go to college, but…
1. Finding the right school
2. The ADA, scholarships, and other help

XVII. Grownups with Hydrocephalus: Making Your Way in the World
A. Facing the Real World: Employment
B. Insurance
C. Dating, Intimacy, and Marriage

XVIII. Making a Family
A. Q + A on Pregnancy with Hydrocephalus
B. Labor and Delivery: What every mom with hydrocephalus should know
C. Being Mom or Dad with Hydrocephalus
1. Surgery, Seizures, or Migraines when you have a little one
2. When your child has a medical problem
3. Taking care of yourself and why you must put yourself first
D. Telling Your Kids About Your Hydrocephalus
1. Preschoolers
2. School-aged children
3. Junior high and high school children
E. Your Spouse and Your Hydrocephalus

XIX: “But You Don’t Look Sick…”
A. Educating society about hydrocephalus as a chronic health condition
B. Dispelling the Invalid Mentality and Striking a Balance

XX: When a Sibling Has Hydrocephalus

XXI: “We Were Told Hydrocephalus Wasn’t Genetic, But…”: X-linked Hydrocephalus

XXII. What We Still Don‘t Know

XXIII: Tying It All Together

Hi Lizard,

First of all, thanks for the link to this site.

Is this a published book? Or one you are working on? The outline looks very informative!

Have a great day,
Kelly

Hey, Kelly.

It's in the early stages of planning at the moment. There are lots of chapters that haven't been "taken" yet, but a bunch of us from the original BT site are collaborating on it. If you're interested, let me know.


LIZARD

Hey Lizard,

I would love to know more about this book. I am always looking all over for mmore info on hydro and if this book is it hey I am all over it, lol!

I'm sorry that I can't recall who was doing what chapters, but I can tell you that a number of them haven't been "taken," so let me know if you're interested in one (or more). I plan on the chapter on making a family and probably at least one other. If anyone remembers, feel free to post!



LIZARD

If I remember correctly I was going to do something about in-utero dx, and seizures and hydro (or at least part of it!)...

Hi welcome back!! I already did the outline on causes.

I will fill in and write chapters that are in need toward the end - I know those will be the hardest to get done.

I will work on the complex, simple partial ones - as well as the surgery prep-type ones in the next couple of months. Do we have any kind of timeline to meet as of now?

Thanks,
Kathleen

Hello Everyone,

I wanted to do a chapter on service animals. Like seeing eye dogs dogs for people in wheel chairs and for people with seizures ect.

Ripplegirl99

I'm happy to contribute to the adult onset section and employment section too as that's been a journey for me! Aren't our neurosurgeons gonna be impressed? This is brilliant, Lizard. Good on you!