Wednesday, September 30, 2009


Today has left me feeling lost and bewildered. There's nothing more frustrating then spending two hours of your time, going back and forth with a doctor, only to have them leave you with more questions then when you went in there.

I, in fact have Hydrocephalus. But the doctor can't guarantee a shunt would improve the symptoms I have been experiencing (debilitating, daily headaches) She feels that I have ..."adjusted and compenstated" for my hydrocephalus. (which if compensating means having headaches, that would bring the average person to the ER, I think that is HORRIBLE HORRIBLE news)

Also, my Cisternogram came out "abnormal". This was the testing I had done last week, in which a nuclear isotope was injected into the lumbar space in my back (it's basically a spinal tap)
I was monitored over several days.....the drs were checking to see if the isotope was being absorbed or staying trapped in the brains ventricles. And Taaa daaa, it in fact DID stick around in my ventricles longer then it should have.

Scrambling for answers, and wondering about what in the heck is going on.....we phone the Neurologist and was told by her to be seen by the Neurosurgeon, to be evaluated for a shunt. In the meantime, the headaches did not let up. I have been taking the meds and doing everything I can possibly do.

When you are sick and you need help, you are supposed to rely on your doctor--someone who is knowledgeable, and who really cares about you.

I'm not sure where to go from here. But I know that my head (hydrocephalus and all) will remain high. I will not give up. I will fight until someone hears me.

After a Neurological exam, at the Neurosurgeons-- I found I am losing hearing in my left ear. I will follow up with this, and get a good hearing test. I also have a Visual Field Test scheduled for Monday Oct 5th. The Neurosurgeon told me, that if the visual field test shows pressure and changes in vision , a shunt may be the answer (that just left me with more questions) But I guess if I got a shunt due to vision changes, it could restore and improve any losses....but I'd still have the headaches.

Spin spin spin

We'll update as we can.

God Bless and thanks for the support!


1 comment:

  1. I have a shunt, but mine is for my back.. And when it messes up i do get headches. I wish you all the luck in the world and will be saying a prayer for you