GOING TO HEI

[4cm in Pacific Northwest]

Mel,

You had surgery on the Sept26th – yes?

This has you today at just over 2 weeks post op. AT this point I am guessing the meds are playing havoc on your body (GI included) and  I know I was the most down right about that time.

Are you still at HEI (St. Vincent’s area) or are you home now?

You are writing and posting already - good for you!

I want to tell you that recovery does get better with time. I called an AN forum person, who lives in my area back here at home (I went out-of-state to CA for surgery), and she told me not to be expecting to walk, unassisted, until week 4. I wrote this on the calendar … and she was bang on to the day. This week I just passed the 6 week mark (Wednesday) and I can now actually ride in a car without wanting to … to … (ok whirl and hurl)… improvement does happen… I can testify to this.

I did not look into a mirror for 2 weeks. The first time was grueling. I also do not want to view photos my husband is taking of my face (we are doing this so we can document the improvements as they come – and thesey are VERY slowly coming). Do not bottle up your feelings and frustrations- write down your thoughts (or dictate these to a friend or a tape recorded to note down later in a journal. Your booklet you are doing with your mother sounds like a positive activity)… this will help you to reflect and realize that there is progress- however slow this may appear.

It is hard not to be an impatient patient. (I know this fisrt hand)

Hang in there and know that you can reach out to people on this forum. Never did I know I could laugh at my situation until I posted “Drunken Sailors in the Wind?� and Captain Deb came back with a post that had my stitches almost pop- I laughed so hard. Don’t pent emotions back: cry, laugh and write your thoughts and ideas down.

Keep moving forward.

4

[leapyrtwins]

Mel -

so glad that you feel well enough to post and tell us how you are doing.  I can relate to the bad attitude and impatience - unfortunately, sometimes it goes along with AN surgery (it's SO frustrating recovering!!) - but as "4" says, recovery will get better with time.  It's a tired, old cliche, but try to take it one day at a time.  From reading about other's experiences on this forum, a twitch here and there is usually a good sign.

Have you heard anything from Mary Ann?  As I recall, she was having surgery the same day as you and I was hoping we would have heard from her by now.

Jan   

[MGengo]

Hello, thanks for asking about me.  I arrived home on Friday, October 5th and have been recovering nicely.  I have been taking it really easy since I am terrified of developing a CSF leak.  I am able to walk unassisted around the house and take 2-3 block walks each day.  I can't see very well, lots of dizziness, some double vision due to eye dryness.

The only thing that really bothers me now is the facial paralysis.  The drs. report states that the facial nerve was intact, so this is supposed to be temporary, but I'm skeptical.  Has anyone gotten facial movement back within the 2-3 months the drs. claim will happen?

Mary Ann

[Lainie181818]

Hi Mary Ann,
I had 1.7cm removed mid Fossa at House 18months ago. My facial nerve was stretched and I was told the paralysis was temporary. I'm still waiting. I do have good and bad days and I try and make the most of the good. My face is always better in the morning, it actually looks normal until I talk. I get very frustrated and I am preparing myself that this is as good as it gets. I have heard that it can take up to 3 years. My eye is blinking bout 90% and i rarely use drops so that is great. I massage my face a lot and also my eyelid [ which i think really helped the blinking ] Dr Brackmann said that the face never returns to exactly how it was but i do get a lot of zapping, twitching, and a feeling that something is going on, so I'm hoping these are all good signs. Sometimes I can see it twitching, Has anyone else had that?
Hang in there
Lainie.

[leapyrtwins]

Mary Ann -

good to hear from you; was wondering how things turned out.

Sounds like your recovery is progressing nicely.  Didn't have facial paralysis myself, but from what I've read on this forum, it can be a temporary thing.

Jan

[OTO]

MGengo
Lainie1818181

With the facial recovery, you just need to be patient.  I will be 5-mos post-op on 22nd Oct.   My facial nerve was "slightly stressed" during my surgery and when I first came home, it bothered me a lot.  Dr. Slattery said I was a "2" on the House scale of "5" (lower number is better.)

I had a hard time talking; I use to bite my tongue accidently, my eye felt very dry and I use to dribble food and drink down my chin.

Now I only have a hard time if I have to chew a tough piece of steak or bite into something hard (like a sandwich made with french bread baguette).   I get twitches and tics every once in awhile (especially under the eye).   My eye tears like crazy when I eat (tears roll down my face).   The opthamologist said that its the nerve fibers regenerating.

Talking use to be hard because my jaw and teeth hurt, but that has passed.  Some of that is the facial nerve, and another part is the incision through the temporal bone.   

[bpham]

I had Translab about 10 weeks ago.  Before the surgery I had some serious facial weaknesses.  I took some Prednison before and after the surgery.  After the surgery, Dr. Stefan (HEI) told me that my facial issue was like a 1.5.  Now, after 8 weeks, it is almost normal.  No one can tell if I had any issue except I can feel tightness in the side but does not show.

It will definitely get better after some time.

Hope this helps.

[4cm in Pacific Northwest]

Improvement happens...


House Brackmann Scale of things
*     Post surgery I was a #6 on the House - Brackmann Scale
*     3 months and 5 days (not that I was counting    or anything) I saw my first movement
*     Now 4 months post op I am a 3.7 on the H-B scale of things

For this Holiday Season I had 2 wishes actually come true
1)    I could smile on Christmas Day for my family and friends (on both sides of my face)
2)    We could get snow for Christmas (I have been in NW Oregon over a decade now and it has never snowed
       on Christmas Day – until this year    )

I hope this spreads some optimism.

Cheers and Happy Boxing Day,

4 

Boxing Day?
http://en.wikipedia.org/wiki/Boxing_Day