Questions from a new member.
 

Well, my name is Jeff and I was diagnosed with congenital hydrocephalus at 16 after being thrown head first through a windshield in an accident. Shortly after, I had several MRI's done, a consult with a neurologist and neurosurgeon about my what it meant and what may have to happen.

Anyway, long story short, I didn't have insurance at that time and I'm wondering if that's why I didn't get treated?

It's been 20 years of no active sports and careful about hitting my head for fear of seizures or death as told by the neurosurgeon.

Starting in december of 2013, I began passed out for no reason. I went to the doctor about it and they did eeg, ecg and all blood tests came back normal.

So, within the past 2 months, I've passed out 6 more times and went back to the doctor who said " it's probably tied to my anxiety and depression " ( I have bipolar depression ) so, I told him every time I did it, I wasn't feeling anxious, sad or depressed and that it wasn't normal and that I'd been diagnosed with hydro 20 years ago, I wanted tests to find out why.

Anyway, after feeling ignored, he agreed to a CT scan. Results were sent to him and the office called to tell me he wanted to send me to a neurologist. Having gone through all of this at 16, I remember the " options, risks and procedure ". SO, I'm wondering if now that he's sending me back with pretty much every symptom to talk to the neurologist, is that a sign of definite surgery to come?? I'm waiting to hear back for the appointment.

In the mean time, I've read many many pages on the different situations, watched videos, etc. (sort of fixating on it). I'm not scared, just like to know what and how things are done.

IF I have surgery, how much pain is it going to cause? And, why wouldn't they have done it when first diagnosed. The fluid pockets took up about 2/3's of the brain. Give or take.

- Jeff

It sounds like your body was compensating for a long time. It might be decompensating or it could be something else. Just a note, EEG being normal means they didn't see anything, not that the person is without seizures. Some people (with seizures) need multiple EEGs to catch something on EEG (catching a seizure is hard, there are things they might see between seizures, often better at catching something during sleep), some people have seizures too deep to show up on the standard EEG. Something like 20-30% of people with hydro have seizures, it is a higher percentage for certain etiologies.

The fact that they said it was congenital means they saw an obvious malformation, like chiari or dandy walker. Just seeing something does not mean it needs to be operated on, the benefits have to outweigh the risks of surgery.

So good for you for pushing for checking things out! But make sure they really figure out the cause of you blacking out and they don't jump to conclusions as unneccessary treatment can cause serious complications.