To all newbies!

[teffaz]

To all newbies,

If I may be so bold as to make a suggestion to all who are considering microsurgery or have it scheduled:
I would like to let you know something I wished I had known before my surgery (which was May 28).

Prior to surgery I was told by my neurotologist that my chances of having facial weakness after surgery were 2%. (I believe this was because I had a small tumor.) Therefore, I did not give a great deal of attention to facial weakness issues.

I was left with a grade 3 (out of 6) facial weakness following surgery. Part of that involved my left eyelid not closing completely. I was given eye wetting drops in the hospital, wore an eye patch at times, and was discharged. I used eye drops at home, but they were virtually useless. My eye was dry and painful until I saw my neurotologist 11 days post op. He prescribed eye ointment--much different than eye drops.  The ointment (Puralube?) made a humungous difference! My daily ritual consists of putting it in my eye every few hours so that my eye is moist and protected.

Just thought you might want to think about being assertive about getting more than just eye drops if you have eye issues following surgery. Since you'll be in recovery mode in the hospital, you will probably want to let your advocate know about this (your family member or friend who will be there with you), so that they can remember to ask the doctors about it.

If you'd like more on what surgery was like for someone who had translab recently, you may want to see my thread "Brenda (Teff) is now a postie!" in the AN COMMUNITY section of this discussion forum.

I'm now three weeks out, and very thankful to be feeling so good. I am still very dizzy, but persistent in taking a daily walk (slowly!). I tire very easily, so rest frequently during the day. Facial weakness is improving, and my smile is returning! Oh happy day!

To all of you on this forum: do you know how wonderful you are? I cannot imagine going through this journey without all of you beside me.

Best,
Brenda (Teff)

[Keri]

I agree with Brenda. I didn't expect facial weakness / paralysis at all, and got it. My eye wouldn't close and the doc gave me drops. I used them several days and the just weren't working (at that point). I got on the forum under 'eye issues' and found ointment and also gel type drops, that work really well.  Much better than the drops. Now, since my eye is a bit better, the drops work some, but the gel works better.
Good advice from Brenda.

Keri

[wendysig]

Brenda,

I'm very sorry to hear about your  facial nerve problems.  Unfortunately, besides size and location, how sticky the tumor is impacts facial nerve outcome.  Unfortunately, there is no way the docs can know how sticky a tumor is until they get there. Everything else in your MRI must have  inidcated a good facial nerve prognosis.   I would say that your tumor must have been stuck to your facial nerve and so, despite its small size you still ended up with (hopefully temporary) facial nerve dysfunction.  I hope things improve for you soon.

Best wishes,
Wendy

[Jim Scott]

Brenda ~

Thanks for the very relevant advice regarding the need for AN patients to ask for eye ointment when dealing with facial weakness post-op, as opposed to simply accepting eye drops, which are ineffective for most patients with eye problems following AN removal surgery.  I'm sorry you have this issue but trust the ointment will continue to help and that you'll eventually regain complete facial mobility.  I appreciate your thoughtfulness in posting this advice to our 'newbies'.

Jim

[epodjn]

MRI's don't always tell the whole story. My tumor looked like an AN and I was told I would have no facial weakness at all. I was't worried about it. When they got in there they discovered my tumor was a facial neuroma and hat to cut the nerve to get it out. It was such a shock to wake up to eye drops, eye patch, and the feeling that someone had put a very heavy mask on my face. I was not prepared at all. I would advice anyone having any cranial surgery near that area to learn about facial weakness just to prepare themselves for the "what if" of it all. I think i would have dealt with it better if I had more knowledge. You can never know enough about what might happen. I was lucky, they have me the puralube right off the bat. But no one told me to go see my eye doctor. I would definitely advice anyone with an eye weakness to be under the care of an eye doctor. He's actually been one of my biggest supporters.

[teffaz]

Thanks for your replies. I am learning so much! (And have so much more to learn.)

When they got in there they discovered my tumor was a facial neuroma and hat to cut the nerve to get it out.

Epodjn: What is the long-term prognosis for your facial paralysis? Where are you now in eye function?

Cheri: good luck on your one-year MRI!

Best,
Brenda (Teff)

[wcrimi]

Great advice Brenda.

[moe]

Brenda,
Good advice to the newbies.

I woke up with news that they had to cut the facial nerve to get the tumor. I was so ANGRY! But I guess I can start another thread for that

They took good care of my and promptly within 24 hours sewed the eye half shut with a cotton ball. I had the tarsorrhaphy a couple of weeks later. Gotta protect that cornea. VERY IMPORTANT!!
Maureen

[epodjn]

My eye function is NILL. Not even a twitch, so far. But I'm very hopeful because I am getting a little bit of function back in my lips so hopefully my eye will be next. I have been told that if the nerve is cut the best you can hope for is a BH =3 level of function. I would be just fine with that, thank you.

DHM, I'm with you. I was so angry when I figured out what had happened (cut facial nerve) This was never addressed, or even suggested as a possibility. I was told I didn't have to worry at all about facial paralysis. Then I woke up totally paralysed. In fact, it took me a few days to figure it out. I'm sure I was told in post-op but was too out of it to remember. I know my family told me also but no memory if it. I finally figured it out when I finally got the cathater out and went to the bathroom and looked in the mirror and saw to my surprise that the whole side of my face was sagging. I knew I was having problems with chewing, swallowing, speaking but thought it was taking a while to come out of the anesthesia. They should really prepare people for it "just in case".