Hi everyone!
I wanted to give another update at my 3 week mark, as it really helped me reading other people's weekly recovery updates. 2 weeks ago I wrote that I was doing well but some facial palsy set in after going off the steroid Decadron, so they put me back on it and I can say that it is helping! Smile is still crooked but my face is much better and in a few weeks I bet I'll have most facial function back! That Decadron is crazy though- I can't stop eating, my face is totally broken out, and I am not sleeping well. But given that it's keeping the swelling down and helping my face- I'll take it!
Aside from that, I take Tylenol as needed, maybe twice a day, and I stopped the Valium a few days ago. However I started noticing I felt really horrible off the Valium so i took 2.5mg before bed last night and instantly felt better. I don't want to to use it as a crutch but it's amazing how much better I felt when I took it again. I'll continue to try and not take it- but will if I need to!
I started PT and was told to not do long walks- but rather multiple short walks throughout the day and this has helped tremendously. I get out 2-3 times a day for .5-1 miles at a time. Plus my X eye exercises of course! I've found that I am slowly becoming more independent. I have a lot of help with laundry and cooking and showering and everything at home which is great- and I still need "help" but I am becoming more independent. What bothers me more than anything are the ups and downs. Why do I feel so good one day like I never had surgery, and the next day there is such a loud noise on my surgery side and it pains me to turn my head? And I can't get off the couch! Feels like someone is blowing up a balloon through my surgery ear sometimes!! I just wish it was consistent, ya know?
Another issue I've been dealing with is a nasal drip. I'm talking like 4-5 small drips a day out of the AN nostril. This is is not constant, does not happen every day, but has me freaked that it's a CSF leak even though I had a drain for 5 days after surgery.l have called the dr and they didn't tell me to come in to the ER unless it was a constant drip that didn't stop. why is this happening 3 weeks post op? Since it is not a constant drip and doesn't happen every day, my dr told me to get a specimen container and try and collect any fluid to bring in next week. It's just frustrating to not know if it's CSF.. I don't want to spend my days worrying if I'm leaking. It's miserable and I just want to worry about recovering and not having a specimen container nearby! It could just be nasal drip- who knows! It's allergy season! But I'm so paranoid! And we are talking like 1 drip a day- with a few days having maybe 3-4 drips. Ugh. Either drip or don't!! Haha!
But other than that I am doing OK. My body feels good- it's my head. Sometimes my head feels so swollen and numb and other times it feels normal. What causes this fluctuation?? It's not pain, just discomfort. Hopefully with time it will disipate. I will try walking in a grocery store next week and maybe even doing some cooking. I get plenty of rest but also keep myself busy with jigsaw puzzles and wedding planning and books on tape and movies of course! And eating, thank you Decadron
it's just frustrating to feel so good one day and so not good the next. Again this may be related to the Valium so I'll see if taking that again makes me feel better. And I'm off Decadron in 2 days so we will see how that effects me too. Maybe finally get a full night's sleep!
Onto week 4 which is hopefully a little more energetic and positive! I definitely need to focus on positive thinking and visualizing myself normal again. I have my nf2 appointment at MGH (since I'm young and had an AN) as well as a follow up about the very minimal 1-2 nasal drips. Man, ANs are the worst! Still wouldn't trade my MGH team for anything. They're the best!
