I was having more and more high pressure symptoms, so scheduled appointment to see new neurosurgeon to discuss having an adjustment. During my routine follow ups with neuro ophthalmologist and ENT in preparation for appointment (always like to make sure nothing else is contributing to symptoms before I see the surgeon) it was discovered that my pituitary gland was enlarged. This could also cause a lot of the symptoms I was having, so ENT wanted an MRI to make sure I hadn't developed a tumor. I thought it was perfect timing since I had appointment with surgeon anyway, but it has been a struggle and I'm not sure it's right.

The MRI was fine and I saw the surgeon almost exactly 24 hours later. I didn't feel great but wasn't on the floor writhing in pain, so took it as a win. He decided to take shunt down a notch because high pressure symptoms had increased, saw nothing abnormal in MRI, so I left feeling pretty good about it. Even started feeling better after an hour or so..all good signs!

I had to sleep with my head elevated for 3-4 days because I had the wooshing in my ears if I laid down, but thought it was high pressure because of MRI. Also had moments when my spine and back of my head hurt so much I'd like to vomit and had to lay down to get relief, which is low pressure. In addition I've been very emotional (which I hate), so swing between extreme irritability and crying. This includes moments of "pain rage" when I feel it build and try to reason with myself, but completely lose my mind and don't feel better until I snap at everyone in a 10 foot radius. Then remorse sets in and I'm apologizing for another embarrassing outburst. Not to mention the moments of not being able to figure out instructions like getting lost when trying to meet friends at a new restaurant or there's a detour because the on ramp is closed..not being able to get from point 'a' to point 'b' with step by step instructions from GPS because they don't make sense to me and having to pull over to get my bearings is unnerving. I mean I'm used to my mind going blank, slurring my words, or even using the wrong words, but this seems different. 

The surgeon said it could take a few months for my body to catch up to new adjustment, so is this all a part of that adjustment or something that I should address? I know the MRI can basically turn off the VP shunt, so hoping my pressure just got too high and my body is now adjusting to lower setting, but this seems more extreme than typical adjustment with the LP shunt. Anyone experience anything similar or have any advice?? I hate the unknown and feeling out of control

I don't have any personal experience with shunts.  but what occurred to me while reading your account is a question of whether any of this could be a form of a seizure.  a seizure involving your limbic system can affect emotions.  OSA makes seizures worse.
when I get similar symptoms, extreme irritability or not being able to think straight, it's from sensory overload.  if you can get away from noises and people, is it better?  driving in the car is a total overload to me because there is too much visual input and I always miss things.

but since this started after your doc dropped your pressure, it's suspicious that it's just not right.  can you go back and get the pressure checked?  maybe he went from too high to too low.  maybe he went from too low to lower.  it's better not to do things blindly.  I find all the time with my thyroid that I will think it's too high but it's actually too low.

Thanks Deb, I did leave them a message just to make sure. I do have moments of seizure-like episodes (I call them "head between cymbols" moments because it's what I assume those cartoon characters experience..lol). They explained that my ventricle is a little smaller, so my brain tissue gets sucked into shunt when draining at times..just have these moments until CSF builds back up, which usually just takes a matter of minutes. It sounds horrible, but so much better than the pain and other symptoms I experienced with the LP shunt!

Just an update..the surgeons office asked me to give it more time because everyone responds differently to adjustments. They are not concerned and just asked me to track my symptoms more closely, so they can tell if I'm starting to have low pressure or just fluctuating due to the adjustment. I hate being the princess and the pea all the time!!!

that is a cop out for the fact they screwed up.  if the adjustment was going to help, wouldn't it have done so immediately?  or by now, certainly.  it's been weeks, hasn't it??

They usually say it can take a few months before you notice a difference and you shouldn't make any other adjustments for at least six months because it takes time for your body to catch up. It was explained to me that unlike a person with diabetes, whose sugar levels fluctuate throughout the day, people with IIH fluctuate over weeks, months, and even years. Although we're also supposed to be super sensitive to every little change (weather, weight, altitude, etc), so I'm not sure how those theories work together.

With the LP shunt I usually had an immediate reaction, good or bad, and it would take a few weeks to even out, but this is my first experience with a VP adjustment and I'm not really sure what to expect. I did initially feel better, but the fluctuations have been rough. I also have been eating more processed food with the holidays, am just getting over the flu, and we've had some extreme weather changes..not sure how much all of that plays into it. I'll see how I feel after I'm back on track.

I honestly think they don't know what they are talking about.  how the H^%$ would they know?  WE live with this.  it fluctuates HOUR TO HOUR, not month to month.  I am just disgusted, really.  maybe you need a new doctor.

Yeah, I'm pretty sure none of them have a clue. Although, I loved the last surgeon..I just can't drive 8+ hours to Johns Hopkins and follow him :( I was confused by the statement regarding month to month fluctuations because he also confirmed that people with IIH are very sensitive to everything and are affected by every little change including food, environment, weather, etc. I wonder if he's talking actual physiological changes? No clue..

But, it has gotten better. I haven't had any more of the confusion or cognitive problems, so hopefully we're at least on the right track. I'm still being affected by the weather changes, which annoys the crap out of me with this psycho Ohio weather! So glad global warming isn't a thing =P

So, the enlarged pituitary ended up being empty sella syndrome. Apparently that's why this new neurosurgeon said they would just monitor it. My primary physician was irritated because no one did blood work to check my hormone levels. Although she gets irritated with the neuro-folks a lot because they blame everything on my conditions and don't look any further. At least I know I'll be covered eventually..lol. Luckily she's with a new health system and can see my records from Cleveland Clinic and other local facilities..that's how I found out about the empty sella syndrome, not the ENT that ordered the MRI or the surgeon that reviewed it. They just said it was nothing to worry about and they'd monitor it..grrrrr. Some days I am so exhausted trying to keep up and figure things out for myself!

wow, how did they go from enlarged to absent?????  I'm glad you have someone who is paying attention.  I definitely get the frustration with having to always be on your toes to manage yourself.  no one else is going to do it for us.  the moment I start becoming senile, I will spiral down the tubes quickly.  now my son is sick and I can't find a doctor who understands what is wrong, while I do.  it's killing me.

Deb, so sorry to hear your son is struggling again! I tell my Mom on the time that this disease is harder on her because she's had to watch it all helplessly..parents have the best and worst jobs!

I guess the pituitary showed as a mass on CT, but when they did MRI they found cell was full of spinal fluid and pituitary was completely flat.