can you get a second opinion? did they ever figure out why you had that one sided numbness? were you worked up for hypercoagulation? maybe your sleep apnea got worse?
have they confirmed that your ICP is now normal with the shunt?

I don't think the attitude is normal, but it's typical.

In my experience, there are two different styles when it comes to difficult diagnosis. Perhaps because of the time limitations most doctors face, a lot of them sort of "know what they don't know." So he can look at you and think "I don't know what this is, but I feel confident it's not this, this, or this major diagnosis." Those doctors are not going to spend a lot of time searching their brains for answers beyond that, he already knows he doesn't know. Then there are the doctors who enjoy the mystery and challenge of a difficult diagnosis and will spend more time pondering it, researching it, brainstorming, talking with colleagues, etc. Having mysterious health problems myself, the second type are the ones I seek out, already knowing that all the obvious things have been ruled out for me, I need the outside-the-box thinkers.

Hope that made sense.

I too think it would be reasonable to seek a second opinion. And no offense to your first neurologist, it's just that when you have something tricky going on, the more smart brains you have trying to figure it out, the better. Do you have access to a major medical center you could get worked up at? Like Mayo?

In my humble opinion, treating symptoms only is one of the great fallacies of modern medicine. That's where a functional medicine doctor can come in handy. Or a really great chiropractor. I wouldn't see them in lieu of continuing to get to the bottom of your symptoms with neurology, but in complement to that.

Sorry you are feeling so yucky. Hope you have some answers and or improvement soon!

Thank you so much for your replies!

Here's the "fun" part of all this. I had a ct scan in December to check my shunt - other than a trip to the ER that was the last test. I haven't even gotten any bloodwork...not that I want to be poked seven hundred times but I'm thinking that may answer some questions.

At this point, I am considering getting an application for Mayo. It's a drive, but several people have recommended me to go there, including my husband. Right now though, I am battling nightmare head pain, complete with brain fog and even more dizziness. I am trying to chalk it up to being too busy last week, but this is day 3 of the increase...and I was at the neuro last week.

Thanks again for helping me understand a little more - not sure if the brain fog is causing extra confusion, or if it was legit.

Hello,
Is your shunt valve adjustable? I was warned about face drooping and limb weakness if a shunt was draining too fast or too slow.

Just a CT scan alone cannot diagnose shunt failure. You need a shuntogram as well. They inject dye into your shunt and then use fluoroscopy to watch where the dye goes. Talk to your NS about having a shuntogram done. Ventricular shunts fail all the time in PTC patients, because our ventricles are normal sized and collapse on the shunt tubing when the shunt drains CSF, this clogs the shunt tubing requiring it to need replacing.

I agree with all of the suggestions. You do need a shunt o gram to actually check the function of your shunt, not a ct scan. They should definitely do a blood workup on you. If you are taking Diamox, they should be doing this periodically anyway. I do not like drs that shrug off issues, at least give you a referral. What state do you live in?

On another note, you know your body better than anyone. Demand answers and further testing. My shunt o grams came back all good. They kept telling me my pressure was 18 and I was good. They kept saying migraines, migraines, migraines..... I came back with.... I'm on 2000mg of Diamox a day, my VP shunt is supposedly working, so why do I still have vision loss and why, in my case, do I paps again if my pressure is normal? That conversation led to my second shunt, an LP shunt. When they put the shunt in, guess what???? My pressure WAS high. Who would have guessed?!?!? I don't care too much for my neurologist but he is there only one so far that hasn't told me that I've exhausted all treatment optops and come back if something changes. He sees me every 2 months like clockwork. I tried going to about 4 other neurologists before deciding I would just stick with him. When the SSA judge asked me about it, I told him i had tried getting second opinions from them but they all said there was nothing else they could do for me. When they reviewed all my medical files there were over 900 different files and reports they had to go throug