Back and recovering nicely.

[cheza]

Hi to all,

Firstly thank you for all your positive thoughts and best wishes, they definately helped because I came out of the anasetic smiling and chatting away to all the nursing staff and doctors, who were all quite suprised how well I was.

I was in hospital for 8 days I had a little CF leak so I had to have a pressure bandage appliedand and left on until the day I came home, it was uncomfertable but it did the trick, I have grade 6 facial paralasis (I think that basiclly means no movement) my left eye won't close, I have to have it taped and i have a horriable ringing in my left ear.

Most strange sensation it the fact that the left side of my head doesn't feel like my own, so numb, oh and my stomcah incision has heald really nicely but its very swollen.

Its good to be home, I have good times and bad, I can feel fine and then all of a sudden I feel really sickly and tired, in fact I'll keep this short as not feeling to rosey right now.

I will keep updating think I need a sleep now eyes are tired.

Thankyou all once again ,speak soon Cheryl.

[yardtick]

So glad to hear you are at home and recovering.  Listen to your body.  Be a pampered princess for a while.

Anne Marie

[lori67]

Cheryl,

I'm so glad everything went well and you're feeling good - well, pretty good I guess is more like it.

Get lots of rest and take care of yourself.  I know what you mean about your numb head not feeling like your own.  When i tell people that my head doesn't feel like it's part of my body they look at me like I'm crazy.  Something only we can understand, I guess.

Anyway, I'm happy to hear the good news that you're okay!  Keep us posted and continue to get better!
Lori

[Jim Scott]

Hi, Cheryl:

Thanks for posting.  I was very pleased to read that your surgery went well and you're now home.   

The stomach swelling should resolve itself and the ringing in the ear will probably diminish in time. 

Your facial paralysis is unfortunate but I would ask about nerve graphs for future reference, should the paralysis not abate on its own.

Now, rest as much as you need to and get back to us when you can.  We'll be here. 

Jim

[Captain Deb]

Cheryl,
So glad you are home! Ain't it great to sleep in your own bed again? Relax, and let yourself heal--we will all be sending healing thoughts your way, including Phylls "healing purple energy" as she calls it. Just remember to take things one day at a time and drink plenty of water and eat healthy foods like fruits and veggies when you can. Lots of apples and bananas.  Fruit smoothies made with protein powder, frozen berries, milk or soy milk, and bananas are easy to make and get down and will keep the "pipes" working good when you can't be active, which can be a problem, take it from those of us who have been there! Also take your meds with food as sometimes they can be hard on the tummy.

I had my surgery in the middle of the flippin winter so I had to stay out in sunny California for rehab and then flew to Florida for more rehab so I didn't see my hubby or my dog for 2 months.  I had my wonderful cousin and then a great girlfriend for company, but there's no place like home.

Feel better soon,
Capt Deb

[leapyrtwins]

Cheryl -

so glad to hear from you.  Welcome home.

I can relate to the left side of your head not feeling like your own.  My AN was on the left also and my head still doesn't feel like my own almost 6 months post op.  I like to say it feels like "road kill" LOL

Anyway, relax and take it easy.  You'll find you're sick and tired for a while, but you'll improve daily.

Jan
 

[waypoint]

Congrats on being home. You will find yourself recovery much better at home and as the meds are slowing wheened off, you will also see and feel yourself returning to some normalcy.  I know what you mean about your head. The best description, is it feels full on the left side.  I have found that at night or when its quiet, my head feels alot better, mainly its because less noise means less ringing in the AN side. Good luck and hang in there. Its a slow process and you will find that as the days go by, you'll getter better and better.

[mindyandy]

Glad to hear everything went well. I was thinking about you today. Get plenty of rest and I hope to hear from you when you feel up to it.

Mindy

[sgerrard]

Cheryl, I'm so glad to hear you are home. Now for some rest! I can just picture you popping up after the surgery, smiling and chatting and cheerful, like you do this all the time. I'm sure you will feel better as the days and weeks go by, the big trick is being patient and taking it easy for a while. Have a little turkey on Thursday, then sleep until Christmas!

Steve

[Dan]

Cheryl, its good to here you are home and recovering.  I think everyone has good days and bad days, I had days where I went for a 5 mile walk, went swimming for a 1/2hr, and road stationary bicycle for 1hr and then I also had days where I felt like getting up and eating breakfast was to much.  Listen to your body and when you feel tired rest don't push it.  Enjoy the Holidays and rest alot.
                                                                                     Dan in Germany

[Charlotte Lady]

Hooray you're Back!!!  I'm glad the CF leak has healed up.  As for the rest, time will take care of much of it. 

As for the "space head" feeling, it should go away.  Unfortunately not as quickly as you'd like though.  Take it easy for a couple weeks then get moving!  That's the best way to get your balance and (oddly enough) your energy back. 

donna

[4cm in Pacific Northwest]

Cheryl,

It is SO good to hear from you… and that you are writing to us again. I  had  “5â€? face when I woke up, later eye would not close (eye was shaking all over) and I was up to a "6" too -and full head… CSF leaks…

healing and improvement happens
I am at 3 months and yesterday we noticed a 1.5mm turn up in my mouth when I smiled. A smirk like a Mona Lisa smile. So not a bilateral smile … but it is the first concrete sign of facial nerve healing I have had- that yes improvement happens. I am now sleeping without my temporary sticky-tape eye weight as the eye now stays shut at night…


Why am I am telling you all this?
Well 2 weeks ago I would not have believed I ever would get better and was getting pretty blue. Some days I still get wonky head, dry eye, and today I felt like a drunken sailor and there was not wind… other days I am just fine.


It does get better
Cheryl it DOES get better with time… however every patient is different and you must listen to your body and heal at your own pace. I just gave you my scenario as you at I wrote much before you went in … but know that your progress should not be compared to mine or others as each tumor, location and complexity is different in each patient.

Face
In your follow up appointment be sure to ask your surgeon how the facial nerve responded to the probe before closing. If there was a response … healing will happen (it just started with me) … if not you do not want to wait too long for a nerve jump…

Your eye
Keep your eye well hydrated as to not let your cornea dry out. Remember the “Eâ€? in ENT does not stand for “eyeâ€?…. and insist on seeing an ophthalmologist. Taping the eye shut is very old school and you can scratch the cornea doing this.(The Ophthalmology departments often rolls their eyes at the Otolaryngology departments for doing this still.). Taping under the eye sideways is ok (as to keep the tears in )but taping over the eye has caused cornea scratches in some AN patients. Ask for an eye weight – these do not need to be surgically implanted if you are not ready for this (I was not) … this is a much better solution  than taping the eye shut. Even putting in the goo (lacrilube etc) is better … if the blurriness of the goo bothers you can wear an eye patch until you get an eye weight.

Here is a dry eye forum on the web
http://www.dryeyezone.com/talk/search.php?searchid=101770
(lots if Uk’ers, I noticed ,on the forum too)

Sitting at the computer will dry your eye out … take it in short intervals at the screen.

CSF leaks
Stay clear of salty foods as to not to retain water. Keep your head level and don’t lift anything… Rest rest rest…

Say yes to helpers
Take offers of help. This is your time to be pampered and doted on.

Ringing in the ears
Mine was something awful after surgery … but subsided as the swelling did. Input into the good ear makes this worse so the trick is to wear an earplug in the good ear when it is noisy… even wearing one while the shower is running will help.

I am so glad to finally read a post from you … I was wondering about you… and how surgery went. Welcome back… we are here for you.

Cheers to a speedy recovery. Take Care Cheryl!

4

[4cm in Pacific Northwest]

Cheryl,

One more thing re your "eye"

Here are some threads on eye care from the archives

http://anausa.org/forum/index.php?topic=5211.0

conjunctivitis issues
http://anausa.org/forum/index.php?topic=5307.0

Take extra good care of yourself and be extra diligent about getting care for your eye.

Signed,

4
(The doting mothering one)

[cheza]

hi all,

Thank you for all your response's, and especially to you "4" you are a fountian of knowledge and I always look forward to reading your replys.

Yes the eye thing is becoming a bit annoying, I'm already fed up with having blured vision I'm going to try some different eye drops as I too am using Lacrilube, its the only thing so far that hasn't irritated, I do belive that if I could see properly my balance wouldn't be half  as bad.

moving away from eyes for a moment does anyone have meds for thier tinnitus? I know there are meds available I just wondered if anyone knows if they work?

Horriable, horriable, horriable, feel like I've been clubbing for about 3 weeks, trying to ignore it but its not easy, why is it that the more noise there is the louder the ringing becomes?

I had a reall good day yesterday I felt good no headache just a slight ringing and I just felt a bit more like myself, then today booooo! all down hill again head hurts ear hurts and I just feel blue, sorry, moan, moan, moan come on girl get a grip!

one day at time I guess, here's hoping tommorow will be better

Cheryl XxX 

[4cm in Pacific Northwest]

Cheryl,

Happy American Thanksgiving! I know you are not here in the “excited statesâ€? but this is a day where we all stop the treadmill, eat way too much     and count our blessings.

We are blessed that you are with us, survived that surgery and are a postie…

EYE
Try a preservative free eye drop, celluvisc or “goop�
Here is a US brand that does not have preservatives in it
http://www.allergan.com/site/products/consumers/home.asp?id=celluvisc
See if you can find one there in Britain that is an equivalent.

RE “booooo! all down hill again head hurts ear hurts and I just feel blue,� The AN recovery dance goes something like this
Two steps forward one step back …One step forward two steps back … and then once you think you have the rhythm it changes back again…

Be sure to eat (good healthy food) every 3 hours vs. having 3 big meals and to rest at least every 3 hours.
Sleep when you are tired remember you have gone through major major surgery

Re you wrote “I do believe that if I could see properly my balance wouldn't be half  as bad.â€?
You are bang on. Once I got the eye weight everything changed… and I went on the upswing. Keep pushing forward and insist on getting an eye weight… as it will make a huge difference.

Infection?
Is you tummy incision still swollen?
Are you regularly taking your temperature?
If anything is abnormal be sure to call it in to you healthcare provider.

The blues
The blues does happen. Try to get outside in the fresh air and walk … it will do your body, mind and soul good… take and earplug with you… just incase someone is mowing, running a leaf blower or there is street noise.

Take care and remember it DOES get better.

4