Extreme Fatigue post shunt surgeries

[Pegilton]

I have a 21 year old son who had a first ever seizure and it was discovered he had hydrocephalus. The doctors assume he had hydrocephalus for a while as his ventricles were large and had high pressure in order to push the C CSF through the blockage.  They did a third ventricularostomy but he got meningitis right after the surgery.  Had it for three weeks before it was treated.  After he recovered from that, all was well.   Eight months later he had excrutiating headaches and vomiting.  Turned out he needed a shunt as the previous surgery was no longer working.  Because he is a 6"1 kid around 200 lbs and because he has big ventricles, they played around a litlte with the setting and set the Codman shunt at 180.  I know this is  high, but even at 160 he was a little light headed.  He is away at college and every time we talked to him, he was always sleepy.  For first time ever his grades were lower and he had gained a lot of weight  (240ish).  In addition, the pressure before the shunt was put in pressed his optic nerve and he has double vision.  We are waiting to see if it self corrects (within 6 mos) We are seeing a neurological opthomlogist.  Five months after the shunt was put in, he started sleeping inordinate amounts, 20 hours, up for 2 down for another 16 or 20.  This went on for a few days.  Finally we got to the ER and the shunt had misfunctioned.  The promimal (front end) of the shunt had "sucked in" some choroid plexuses and was replaced.  They kept the shunt at 180.  Still has double vision.   Now he is sleeping a whole lot again and continues to yawn when he is up.  He has been exercising, eating very healthy and losing a little weight.  We went to the ER and the shunt is working fine and they said the blood work indicated his thyroid was fine.  The incredible fatigue seems to have started with the shunt.  Has anyone else had this problem?   I am so concerned and would appreciate any ideas, input, suggestions.

Thank you.

[trouble68]

I had a Codman programmable shunt placed in 2003, and have experienced extreme fatigue, dizziness, nausea, headaches, etc. to varying degrees ever since, even though mine has been adjusted once, and seemed fine for a while. No one will tell me what my setting is and I can't even get anyone to see me now. EMORY lost my records, and because this last surgery was done in an emergency, the doctor used the Codman, which my doctor doesn't use, or even know anything about. As a result, I am going through HELL trying to get some help. My next step is to call the AMA and a lawyer.I will be praying for your son. I can only imagine how rough it would have been if this had happened when I was in college.  

[angelo2k12]

Hi Pegilton

The wife of my dearest friend has exactly the same symptoms. At first she had some light headedness and then some vomiting. She went in the ER a few days ago and found some clog in the input side of the valve. She is now out of the ER and is sleeping A LOT, even when she wakes up she might say a word or two and then go back to sleep as she is talking to you. Because of this frustration we're now looking for valve alternatives, at least the doctor is open to suggestions. How is your son doing?

Angelo