u/butaretherecookies

Update: my neurosurgeons NP prescribed me antibiotics, which is a big relief. No appts required. Symptoms don't seem to be getting much worse, and hopefully I turn a corner soon.

Hey there,

Left a message with my surgeons office this morning, but since it's a Sunday I figured I'd check here and see if anyone else had a similar thing. Started noticing a bad taste in my throat and more throat drainage a few days ago. Yesterday just a bad headache (manageable with Tylenol and ibuprofen) and this morning I have a clogged nose for the first time since post op - and a lot of bright yellow mucus.

So, anyone else have a post surgery sinus infection? Did you have to see a doctor before getting antibiotics? Were you able to see a local doc or did you have to have an appt with your surgeon?

My basic issue is that my surgeon is a long ways away (7hr drive), so just getting an idea of what the process looks like so I can be ready. My son starts kindergarten this week. Of course! 😂

TYIA! Hope y'all are having a nice weekend

Endocrinologist says it's unlikely to be related. But I can't describe it besides that over the past week I e lost my feelings. Feel disconnected, unable to sleep despite having the night urination controlled by demopressin. Is this relatable? Two weeks til my 6wk hormone follow up

I have to pee about every hour, even through the night. My endocrinologist seems to be slow to respond. People who have dealt with it - was it hard to get your doc to take it seriously or to get demopressin? Here's how it's progressed for me:

Immediately after surgery I started peeing a lot and having intense thirst, peeing about every hour or two. This lasted until day 5 post op when I suddenly stopped peeing (peed twice in one day) and developed a massive headache and nausea. I kind of pieced it together and just stopped drinking. Surgeons NP followed up and put me on fluid restriction. Day 10 I suddenly started peeing a lot and frequently again, developed the same crushing headache and nausea, but worse and checked into ER. just high blood pressure and blood sodium jumped from low end of normal four days prior to highest end normal. At that point I just guzzled down water because the thirst returned and it resolved the headache. That was four days ago; it's gotten even worse the last two days, I have endless thirst and pee every hour to half hour. I just manage it by keeping a water bottle beside me at all times and taking small sips to ease the thirst.

Tracking my output today to just make sure my water intake is keeping up. Extremely tired, dizzy, heart racing, and I have to stand up very slowly to not have my vision grey out and lose feeling in my hands and feet. My local doc saw me Monday after the ER visit Friday night. My blood sodium still sitting at the high end of normal, my blood pressure low for me 112/56 and heart rate at 129. Endocrinology zoom appt tomorrow.

Is this a normal course for recovery? I mean to ask, is my ADH gone for good or have others had a similar recovery journey and their ADH returned to normal.

It has it's ups and downs. It's honestly rough today. Just had a zoom with my endocrinologist - who said my recovery looks great I don't have to worry about fluid restriction anymore and they want to switch me to hydrocortisone instead of dexamethasone (assuming I was put on it just as a standard precaution of my surgeon) but today after giving up my fluid restriction, I feel awful, headache and nauseous. Finally got around to calling my surgeons NP this afternoon, four minutes after she left office for the week.

Just to be on the safe side, I'm putting myself back on fluid restriction and holding off on a med change til the surgeon weighs in. This is the second time since surgery I've had a day of horrible headache, nausea and abdominal pain - last time they implemented the fluid restriction and the day after was much better. Looks like I shouldn't have switched it up.

Update: Day 10 post op - Ended up at ER for severe headache and extreme nausea; they said my blood sodium was high normal, but it just swung from the lowest end of normal taken 4 days prior. The only thing that helped was just quenching my thirst, headache and nausea subsided. Back to extreme thirst and peeing every half hour to hour. Waiting to hear what the endocrinologist says. Pretty sure this is Diabetes Insipidus, hopefully I can take something to stop needing to constantly drink water.

Anyone else have a rocky recovery period two weeks out?

Mobility is a bit limited, but I'm able to walk places with plenty of benches. We don't have much money. I would love to see golden gate park. I would love to visit a museum. We don't get the opportunity to visit a big city very often. Asking locals, what's unique? What's amazing? I'm sure there are so many gems.

Anyway, it's worth a shot. Thanks in advance.

Update: I'm very literally sobbing at the kindness of strangers. Thanks you all for just being excellent humans ✨

Any things you'd wish you'd known beforehand? Any tips for a comfortable recovery?

Transphenoidal surgery in a few weeks... Give me some hope 😅

One night, a few weeks ago, it was hot and the doors were open. Well, a cricket got in the house 🙄 there is nothing more annoying than a loud chirping cricket keeping you up all night. Anyway, the chirping stopped pretty quickly and I went to bed, slumbering blissfully.

Morning came, and I went to take a drink from the water on my bedside table. Good thing I looked at my phone first. When I looked down at the cup, yep, there was the cricket, and there were a a couple very long very thin writhing parasitic worms in my cup.

After my soul left my body and I threw the water as far the fuck away from the house as possible. I looked up wtf I almost ingested. And here you go, so you can fuel your nightmares even more, if you wish:

https://en.wikipedia.org/wiki/Nematomorpha

So friends, we always👋check👋the 👏cup👏before👏 we drink. ✨🌠

I have a consult tomorrow morning with the neurosurgeon at Stanford. My insurance wouldn't cover this second opinion because it's a private research hospital. The coordinator for Stanford informed me that they would do this consult as a not billed appointment, and also they have done the authorization process for other people like me. It feels daunting. I do have surgery scheduled at UCSF next month. My partner thinks I'm going to jinx it all by trying to get a second opinion. But what the hell, I just want to try and make sure this operation is only done once. Anyone else go through this process and be successful with insurance?