Feeling like crap!

It always seem 2 steps forward must have a step backward. That's where I'm at now. I think I either have a cold or the starting of a sinus infection. But OMG when it hit, it's like a ton of bricks!

I didn't feel so hot yesterday. I was weak, fatigued, and didn't want to eat much at all. But overnight it got worse. I had weaned down to 50mg a day (30/20), but last night I ended up stress dosing back up and even took extra this morning. This sucks!!

But I'm resting today in hopes its just a cold & not anything else. An infection would suck at this point. And it's Friday of all days! I hate steroids and illnesses!!

Merry Christmas Eve & quick update!

Wanted to wish all my followers a very Merry Christmas! I know I don't post as often as I should, but thankfully my life normally is very, well, normal. Lots of day in day out stuff with the kids & I feel great 95% of the time. It's when I have things happen like this last surgery that I feel I can post & share how I manage.

In this case it's been 2 weeks since I left the hospital & I'm down to 60mg of hydro daily. (30/20/10) I'm feeling it now & my body craves it by the next dose. Hate the headaches, achiness & weakness that comes with it. Especially at this time of the year. I'm holding doses now for 3-4 days before weaning & I think my next cut will only be 5mg in the evening. We'll see. But for the most part, I'm hanging in there!

Thanks again for following me & have a blessed holiday!!

The CSF leak back story

No one has any idea why I had a CSF leak again after all these years. It was so slow, I had no other symptoms other than the annoying drip in the morning & then every so often during the day/night. No unusual headaches or anything. The headaches I did get went away with Advil or Aleve. 

I think I've had it for awhile (I'm going to guess since the summer) and it progressively became worse. In October, I had my annual butt-kicking sinus infection & I went to my primary doctor for antibiotics. I noticed the drip more then & mentioned it, but she said to take the meds & it'll go away. It didn't. 

So in November I went to the ENT because it was still dripping. He scoped my nose & because of all the scar tissue, he couldn't see anything. He gave me allergy meds & a script for a CT scan. Two weeks later, the allergy meds/sprays didn't work and the CT scan was inconclusive, due to not being able to see through all the scar tissue. So he said I need to see a neurosurgeon to rule out a CSF leak.  So another 2 weeks go by & I finally see the Neuro. I explain this long story, lay down for 5 minutes, sit up giving him 3-4 drips to analyze & get back to me. He was pretty confident it was a CSF leak hearing all this. That was a Friday. First thing Monday morning I get a call from his P.A., saying it was a leak & they scheduled me for surgery on Thursday. 

I was floored. I was in such denial, I just lost it. It was all happening too fast. I had to go in the next day for all sorts of preop tests etc. Not being in Seattle where they knew what to do and how to handle everything with me was terrifying! The Neuro had done hundreds of these and I felt I had to trust him & God that they would get me through it. 

Thankfully he did his job well & I no longer have the stupid drip. But from now on, there's no more roller coasters, diving & swimming to the bottom of the deep end or anything that puts pressure on my head. I've even sworn off straws indefinitely. They give you wrinkles anyway. Anything to not have to through this again. 

Follow up!

ENT says everything is healing nicely & gave me some breathing relief by pulling the old snot sucker out and getting rid of some of the congestion I had. He said it may last an hour, but I swear it cleared the majority of it up. Still no nose blowing, using straws, sneezing etc. I see him as we'll as the neurosurgeon in 3 weeks. 

I'm also weaning well. Down to 80mg - 30/30/20.  I still feel weak & my stamina is taking a while to come back so I can't do very much, let alone quickly.  But most of my Xmas shopping has been done online so that's not been an issue. My kids are old enough to do a lot of the wrapping & hubby can do the rest.  So overall things are moving right along! 

Merry Christmas to all!

Current update...

First off I want to start out by saying I'm feeling ok! But I found out 2 weeks ago today that I had a CSF leak. Not going to give the back story right now, maybe another day. But I saw the neurosurgeon 2 weeks ago, explained the situation & managed to give him some drips from my nose. Monday he calls me & says indeed its a CSF leak & I need surgery ASAP! So they scheduled it for last Thursday right here in the armpit of NJ. 

The surgery itself went well & thankfully was successful. But this recovery will be similar to my pituitary surgery. The hospital experience was much worse. The nurses were great but I swore the weekend doctor was trying to kill me. It was a long 5 days on my back. I was in the icu, so they did their protocol which was above & beyond what I really needed. I had 2 iv's, blood pressure cuff going off every 30 min around the clock, blood sugar finger sticks 3-4 times a day, bloodwork drawn (not using iv's) 2 times a day, pulse ox monitor on finger, tubes all over to measure my heart etc... 

The nurses had to come in every hr on the dot to check my mental status so I couldn't have any pain relief other than Tylenol!! On top of all that other stuff, there's what I actually went thru... They went up my nose, scraped my sinuses, repaired the CSF leak, took a piece of fat from my stomach (small incision along my csection scar) & put a long tube up my back to drain the fluid giving my brain time to heal. They took that out on Monday & had to put a single stitch all w/o lidocaine or anything stronger than Tylenol! The draining of fluid from my back once an hour gave me the worst headache ever. I couldn't lay on my sides, so all around it was just uncomfortable. I was given 25mg Fentanyl the last 2 days in the hospital & at one point the on call Neuro had come in to check me after I had just taken the fentanyl & I was getting tired finally after not sleeping all night & she freaked out that I wasn't fully aware & awake.  So again she cut the dose in half to 12.5mg & to twice a day only instead of every 6 hrs. Serious pain & stress!!! 

Then...you add in the fact that normally I need steroids to survive & they had given me just such a large dose (not following my endo's orders at all!) & wanted to wean me right off them quick, as if I wasn't totally stressed out & in pain. Lack of steroids at one point added to the headache. I was at a ten for pain level & they gave me TYLENOL!! So you see my frustration. Thankfully I managed to fight w/the doc about how I needed the steroids & my husband got to the hospital on time to enforce the issue. She would wean no more & my endo could deal with me & the weaning process.  

So that's where I am now. I just got out on Monday on 150mg of hydro to wean from. Again. As of today, I'm on 120mg. I take 50 in the morning, 40 in the afternoon & 30 in the evening.  Slow and steady as they say. Literally & figuratively.