Hello everyone! I am new here and I and I need your advice/help. For the last couple of weeks I have been having these bad headaches that feel like I am under water and like there is a vice grip on on my. I'm dizzy. I have been having nose bleeds but only one side of my head where the valve is. my shunt replaced 4 years ago . I went and got the CT-scan and my doctor who is notorious for waiting till i am in the ER to start to worry says there is nothing. The other doctor in the room says I might have slit ventricle syndrome is there anything I can do to help the pain? Should I be worried ? Any suggestions on what to do? please help! Thanks

Slit ventricles can have chronic headaches associated with them OR one might have headaches due to over draining (if lying down helps, that could indicate over draining). But the nose bleed thing sounds odd, really odd. Do you have any other possible cold/illness viral or bacterial whatever that is complicating things? If possible, you could get your eyes checked (someone who could check you optic nerve for high pressure in case of some kind of obstruction). Have you seen your imaging, are the ventricles slit? One can have slit ventricles without chronic headaches. What is a common slit ventricle problem is if you have slit ventricles and an obstruction, but it doesn't show a change in your ventricles, i.e. one can have bad pressure/obstructions without enlarged ventricles, imaging is useless for such people so they need to press on doctors to confirm things are ok when it is more than a chronic headache (and docs may assume all headaches are the chronic kind where some patients may assume all headaches are emergencies) - checking optic nerve, shuntogram, shunt tap +/- lumbar puncture, etc - but it can be hit or miss with intermittent obstructions.

The ventricles are slit and small.She keeps acting my headaches are normal and ignores me when I tell somethings wrong. I hate to sound like an idiot but I have never heard of shuntogram, shunt tap +/- lumbar puncture, etc . She adjusted the pressure which is what she always does but this happens every few weeks/months. I dont know if I should check with another doctor or just hope that the wierd feeling I have that something is wrong is not real

Does reprogramming the valve normally help you? Is she adjusting the pressure higher or lower (setting going up or down)?

Shunt tap is where the put a needle into the reservoir and can take a csf sample but they can also measure the pressure (isn't completely reliable but as a gross measure might be helpful). Lumbar puncture is a spinal tap but the can take a pressure reading there as well as a csf sample. If the readings are different and can't be explained, they'll revise my daughter's shunt (she has communicating ventricles so usefulness may not apply to you, I don't know). Shuntogram is where they inject an isotope into your shunt system at the reservoir and take pictures of it going through your system and see if there is a problem. There are drawbacks to all of these, small infection risk or doesn't always show the problem. Getting your eyes fully checked (neuro ophthalmologist preferred) would be a great non invasive option.

She keeps setting it higher each time because everytime I go in its always lower than what she set it as the previous visit. I can only say that I have never had any of those procedures done or even mentioned to me by doctor! I think will get my eyes checked

I have never heard of an (neuro ophthalmologist and have no idea how to find one . DO they only this for children??? because I am 27

Re: neuro ophthalmologist
Not only for kids, e.g. our hmo only has one for adults. Easier to find if you are near a major medical school or large city. But a really good ophthalmologist is ok.

If your shunt is not holding it's setting, do they check it every time you go into the emergency dept? Was it just checked? I would be ultra concerned if the shunt was not maintained at the intended settings. Do you work near magnets, headphones and phones have messed up some people. Anything you have close to your head with a possible magnetic field should be checked (think spouse told me there is an app to measure gauss) but otherwise has your implant been recalled or can it be considered defective?

I got a refferal to the neuro ophthalmologist but I am not sure what I need to ask them to look for! i don't work near any magnets of any kind! What should I have the ophthalmologist look for when I see him. What do asSorry for all the dumb questions

The doctor should know what to look at for hydrocephalus/pressure issues but aside from a general checkup, our opthalmologist always checks the optic nerve.

You said your shunt settings have changed and you were not near anything with a magnetic field. Things have affected shunts that people think are innocuous but hope you could follow up on that or determine if your valve is defective - that sounds like a big problem.

Hey Premar,
I had my first shunt as an adult also, 24, and have found it a bit difficult to find info regarding adult hydro. I'm in my early 40's and (so far) have had 6 surgeries. 3 in one year, 2013 was a bad year and things have not improved since. But I have had all these tests. Those questions are not dumb. I know cos I had the same questions. And if you don't know, then ask.
My ophthalmic exam was 2 weeks ago. If the ophthalmologist has your file he will know your diagnosis and the presence of the shunt and its type and what to look for, but for your information he is looking for any pressure on the ophthalmic nerve or pressure on the back of your eye.
Despite the fact that Ive had a shuntagram, CT scans, I can't have MRI's now as they have placed a magnetic valve in me, I've been told 'all is fine' and things are not 'fine'. I have all those same symptoms, minus the nose bleeds, and the headaches are just bloody awful. Pressure behind my eyes like they goin to pop out of my skull at times
I've tried physio, massage, chiropractic, botox treatment, ENT specialists, ophthalmologists and a myriad of migraine treatments. None of which have resolved my situation.
But the ophthalmologist was the only one who spoke about scar tissue from the surgeries leaving some residual affect and after 6 surgeries there has to be scar tissue. I need to investigate this further, but its much better than just being told "...there's nothing wrong just go away, comeback and see us in 6 months..." when you know something is not right.
I have to agree with everything Pogo is saying too. Magnets are a problem, every speaker has a magnet, so phones, not just mobiles, headphones, even earbuds, all have magnets in them. They have readjusted my valve 3 times, but still it does not remain stable. They can't say why and I don't know why, But if you are not getting the answers you want, try elsewhere if you can. I'm about to look elsewhere my self, travel interstate. The NS community is small and trying to obtain an independent opinion can be difficult in some places, so if needed look around
Hope you get some sort of decent response from the dr's other than mine which was basically, "Well, this is as good as it gets"

Merl1n