trying to understand hydrocephalus
 

Recently three doctors have told me after getting the results of an MRI back that hydrocephalus is the likely cause of the symptoms and concerns I'm having. I am a 28 (29 in a few days) female with a history of migraines and recently started having double vision, numbness in my face and steady increase in the number and severity of what I knew to be migraines.

I went in for a mri of the brain with and without contrast because the double vision and migraines were getting so bad. I am also having numbness in my face. I tried getting prisms at the optometrist but they didn't work. The Neurologist I spoke to said his initial thoughts were MS.

We got the results back and found it was negative for MS, mass, tumor, sign or hemorrhage or stroke. But did find that my right ventricle is "moderately enlarged" and recommended me to go have a cisternogram done.

Because of cost, I decided to wait to have the lumbar puncture done and went today to go see an ophthalmologist who is very concerned about the size of the enlargement and wants me to go see a neurosurgeon.

I am so new to this and have read everything I can find on enlargement of the ventricle....apparently it isn't as normal to have just one side so large. I was born prematurely but never had any of these symptoms until earlier this year.

What symptoms and signs did any of you have? Where did you start? I'm a little nervous to think about a lumbar puncture. I don't live in a large city and also found out that it will require some traveling for me to find a neurosurgeon. This is a little overwhelming when they are talking about surgery.

ennairb, I'm so sorry to here that you're going through this.

I am 24 years old and I was born with Hydrocephalus. I was shunted at 3 days old and have been fortunate enough to only have to undergo 2 revisions. I do get frequent headaches and at times my shunt feels a bit sore along my neck but other than that it's been doing it's job well.

The best advice I can over you is to stay positive and when it comes to doctors NEVER take no for an answer. Most doctors (at least in my experience) have no clue about Hydro.

Feel free to send me a message if you need some advice or you just need someone to talk to as you're going through this process.

Remember although it may feel like it sometimes, you are not alone.