Tara's 2 week followup

[TaraT]

Hi everyone!  I had my two-week followup appointment Thursday.  I must say again what wonderful doctors I have.  I saw Dr. Chen first.  His nurse took out the stitches.  They were getting really itchy and tight so I was glad about that.  Dr. Chen asked about my balance.  I said I get around fine.  He asked me to stand up, close my eyes, and march in place.  They had to catch me because I almost fell over.  Kiddingly, he asked if I had been drinking.  I am back on prednisone for my terrible headaches.  I just started them yesterday and I feel that they are helping already.  I was pretty much confined to laying down most of the time since surgery because of the headaches.  I got to see color photographs of the tumor, facial nerve, and my brain.  Couldn't tell much what it was.  Dr. Chen said that my facial nerve was so stretched, flattened and mangled in there.  The facial nerve worked when stimulated but is not working as of yet.  Right out of surgery, my face was a 4/6 and now it is a 6/6 which some of you know is not good.  I have no function of the right side and my eye does not shut.  He said it will be a few months, but they are hopeful that it will come back.  Me and my husband both picked up on the hopeful part.  He wasn't promising that it would come back.  Dr. Chen said that a surgery like mine should have taken 5-6 hours but took 11 because the tumor was very sticky.  He also mentioned which I didn't hear before that they had to leave a tiny, tiny piece in there.  Overall, he said I was doing good.  I go back on May 11th for another checkup. 

After Dr. Chen, I saw Dr. Aziz, the neurosurgeon.  He just wanted to check me out and look at the scar.  He told me also that my facial function should come back and he told me to chew gum.  My jaw is pretty much still stuck and won't open very far. 

I want to say that I am very thankful to be alive first of all.  When I first found out, I thought it was like a death sentence.  It is sad to say but before surgery we actually got some things in order just in case.  Now I just have to work on the rest of the problems.  Lately, I find myself crying a lot.  I don't know if it is from all the medication or what.  It is really weird too because it is one sided face crying.  The right side does not cry. 

I am just so glad to have found all of you!  Oh, I got the coolest get well gift in the mail today --- ice cream!  UPS dropped off four pints of mint chocolate chip ice cream. 

Have a Happy Easter!

Tara

[Keri]

Hi Tara,
Thanks for updating. I'm sorry about the headaches - those were not fun! I had them too, but they're in the past, thankfully! Hopefully your's will be too soon as well. I also have facial weakness, although at 2 mths post op that's gettimg better. The eye thing is a pain. I need to go to the forum on 'eye issues' and ask a few more questions. The big thing is to put drops or ointment in it to keep it moist. I hope that all gets better for you too. A friend of mine also told me to chew gum. You can tell that really is exercising something - I just sometimes keep chomping on the inside of my lip sometimes and have to be careful of that!

Ice cream via UPS! That's great! Have a wonderful Easter.
Keri

[moe]

Tara,
For 2 weeks post op you are doing incredibly well. The crying out of one eye is weird isn't it? And you are on the prednisone which is powerful stuff. Emotions run high after a surgery like this.

Unfortunately, I had to have my face nerve completely cut to get the bugger, but in your case, the facial function should come back. Just be patient. And like Keri said, remember to put eye drops or eye ointment in  your bad eye.
Did they give you instructions about protecting the cornea, keeping your eyes well lubricated, closing eye at night with paper tape or something else etc etc?

And also rest rest rest.
I just posted some pics under post facial issues. Remember, this is not the norm, because the face nerve was completely cut. But there is improvement and will take more surgery I'm sure. I am determined and I'm sure you will be too
Maureen

[Jim Scott]

Hi, Tara ~

We all appreciate your comprehensive update post.  Having the stitches removed is usually a relief for most AN surgical patients....it certainly was for me.  I'm sorry to learn of the issues with your facial nerve and I share Dr. Chen's - and your - optimism about it reanimating in the near future.   Maureen ('moe') was correct about prednisone being powerful and that medications certainly can be chaotic for your emotions.  Many newly-diagnosed AN patients facing surgery assume that this is a near-fatal operation when, as you now know, the mortality rate for AN surgery is around 1% - and falling.  It's a serious procedure but very rarely fatal.  You have a better chance of winning the latest Lotto jackpot as you do dying from AN removal surgery.  Well, close, anyway. 

Thanks for your kind words and congratulations on receiving the ice cream surprise.  Sounds delicious! 

Jim

[TaraT]

Thanks Keri, Moe and Jim for the responses.  I think the prednisone is working for my headaches.  I felt so much better today.  My doctor told me to wear my eye patch (clear) all the time.  I do put drops in during the day and this goopy stuff at night.  I might get some of that paper tape.  Where do I buy that?  Moe you look great in your pictures.  You sound so positive and determined.

[anissa]

Tara, its great to hear from you, hard to believe that two weeks have already flown by.  I'd also heard about chewing gum helping the jaw, I need to try that also.  You have such a wonderful positive outlook, its so great to hear.  Best wishes as you continue to recover!
Anissa