A Little Setback

[amylynn]

Hello everyone, I am home now, got in saturday.  Felt great until late sat night.  Had huge pressure in the back of my neck and stabbing pains in my an ear.  Got up at 1:30 am before my flight, so excited to get home!  walked my a-- off at the airport so we didnt miss our flight and the pressure started.  did ok for the plane ride.  Got home and was up real latewith my family.  Then I got stabbing pains in my ear and mind numbing pressure on the back of my neck.  I woke up the next morning with my face paralyzed on the left side.  Cant close my eye or control food on that side.  Its hard to look in the mirror.  I am back on mega dose of steroids and famvir.
My tumor ended up being 3cm and they got it all.  It did have facial nerve involvement and it had been very thinned.  I dont understand why it was fine for 10 days then this.  I am hoping the steroids will help.  The worst part is my eye is so hard to close, even with tape.  I hope this goes away soon.  I really thought everything would be OK.  If this doesnt change I'll deal with it, I have my life,  a great life, a great family great friends and I know things could be much worse.  I am very blessed.
My thanks and prayers go out to each and every one of you out there who have supported me on this journey.
Amylynn   

[nancyann]

Hi Amy, glad your home with those who love you....  I know how you feel re: the facial concerns, the inability to close the eye is tough.   Hopefully, since you were fine 10 days prior, it's just due to swelling, the nerve is being pinched or something, when the swelling dies down hopefully the nerve will come back.   I have the facial paralysis & at first it was rough but I've learned to deal with it (I pray you won't have to).   Headaches were my biggest problem post op.   Stay peaceful sweetheart, time will help everything fall into place.       Nancy

[Brendalu]

Amy,
I think you got overly tired!  Get rest....lots and lots of rest.  You've got prayers coming from all over for you.
Hugs,
BrendaO

[Obita]

Hang in there Amylynn!!

Lots of us had the same post op stuff you have now.  It is normal.  I too, was fine until about day 10 then the same thing happened to me.  They called it "late onset paralysis".  

As Nancy said, it is all due to the trauma and swelling.  The nerves are very sensitive to trauma and can take a long time to heal.

AN surgery recovery has got to be the slowest recovery there is.  Just take it a minute at a time.  

Thinking of you,  Kathy

[jerseygirl]

Amylynn,

The neurosurgeons say that how you look immediately after surgery is how you would eventually look a year later. I also had facial paralysis set in on the 10th day, and they said it was due to swelling. It mostly resolved itself in 6 weeks, I got additional improvements at 6 months, 1 year and 2 year post-surgery. Only at 2 years it was really perfect. It takes this long to recover! Now is the worst time for you after surgery, so don't give up hope, get enough sleep, eat well and enjoy your family. Your facial nerve in all likelihood will come around. Besides steroids, what other med are you taking?

       Eve

[Patti UT]

Hi Amy,

 Ã‚  I am sorry to hear that you have had this setback. My facial paralysis set in about 10 days out too. I was sitting talking with my mom who was here taking care of me and my kids, went to take a drink of water and my mouth wouldn't close around the galss rim, then I felt my cheek go numb and then the eye. I freaked out, looked at my mom and then look on her face told all. I called in and we went to the Doc's. They said it was delayed due to the swelling. My eye wouldn't shut. They gave me a moisture chamber to wear which was a major pain. The eye thing was the hardest for me at that time. It felt like there was sand and rocks in it, I was pouring natural tears in it every 3-4 minutes. Had to use the gel at night and I taped it shut at night for a while. I ened up at the Moran eye center, had damaged my cornea from the dryness and no blinking. it did get better and my vision was spared but definetly not what it was. My whole right side was limp and not functioning for 3 months. And then it started to come back. By 4 months out you could hardly notice, and now you can't tell at all. I was VERY fortunate most all my functions came back. All that are noticeable anyway.  I still have the dry eye, blurred vision. No sylivia in that side of the mouth, weird taste, very little moisture in that nostril. But all my expressions are there fine.  I'm sure yours is just swelling and will go away in time. I think the facial nerve gets traumatized just from them working around it. PLEASE be careful to take good care of your eye. Use the natural tears & gel with "no preservatives". And use it generously.  I still use them at least a couple times a day, and especially when I have been reading or out in the wind, my eye gets real dry.  ALso, I am SO ghappy you have been doing SO well, but I definetely think you have been WAY Overdoing it. REST GIRLFRIEND REST!   You just had brain surgery fior goodness sakes.

Hugs
Patti UT

[ppearl214]

Amylynn,


HUGGLES!!!!!!
Hang in there!!!!!!!!!!
Phyl

[Captain Deb]

Hey Amylynn
Hang in there sweetheart--we are sailing around in circles off the coast of Hawaii waiting for you!!! So rest up, sleep, eat some chocolate, and make people wait on you. The stories from other patients with the late onset facial paralysis are really reassuring. We love you.


Big Huge Huggles and Major Smooches,

Capt Deb

[wind6]

Hi Amylynn,
I know you must be really scared but I am with all the others when they tell you they think this will be temporary. Mine started about an hour after I woke up from surgery...kind felt like my face was melting off. Now I am almost back to normal. At least close enough that most people can't tell if I don't mention it. I think you just need to rest and take good care of you.
Sending you good thoughts and prayers, Sherry

[Boppie]

Amy, I had late onset paralysis and swelling too.  At day ten my lear lobe, temple, and neck were very warm and painful.  I remember that I kept stroking my ear all through Mass on Christmass eve.  That was day 10.  The next day we took pictures and my eyelid looked half mast.  The dry eye set in and I had all of the paralysis and dry eye I could handle for about 2 weeks.  By the 2 week checkup to have the stitches out my doctor saw me in full droop.  He assured me it would resolve, since immediately post-op I had full function.  The visible symtoms were gone from my face at two months.  Now, at 11 months, all is resolved.  Just this week my chin has twitched and made some adjustments that I didn't even know I was needing. 

Your face will be fine.  I agree extra rest helps. The nerves will heal their pathways all by themselves. 

[vcschaub]

Ditto for me! My face developed facial weakness about 10 days after surgery. All I had right after surgery was a bit of dry eye, nothing major. I also was put back on steroids which I don't think helped much. I also agree that the eye is the worst - can't close, no tears, taping at night......  Hang in there. It will be a full year tomorrow since I had my surgery at House and I am happy to tell you that all is well and I am recovered completely.

[matti]

I know how scary this is, my paralysis set in on day 2. I woke up after napping to find complete paralysis on AN side. I agree that taping the eye is a real pain, make sure you use gel, as the eye drops don't last very long. I used the moisture chamber (clear eye patch) and that was helpful. Careful eating as I would tend to bite my lip and tongue.

You have been  through quite an ordeal, so please rest and take it very slow, so your body can focus on healing. Enjoy being pampered and taken care of

As everyone has said, this is temporary, I started getting slight movements with few months and was back to 85% within the year. I know you will be just fine!!!

Keeping you in my thoughts and sending hugs,
Cheryl

[Battyp]

There are many voices of reason who have spoken.  I think you over did it with your trip home and you're body is revolting and reminding you that you just had major surgery and you need to take it easy and let others help you right now!  Get some rest!  And it really is a minute by minute thing!

Big Hugs,
M

[Gennysmom]

Amy...my facial issues didn't come on suddenly, but I was about 95% after surgery and it slowly changed and by the time I was off steroids, it was all gone.  I'm 4 months out, and I'm probably at 60-65% back now, and the doctor expects that I will get back to the 95% eventually.  It's a pain in the butt, but you had it and that's a real good sign that it's going to come back.  Take care of yourself, keep everything hydrated, and just don't push yourself too far too fast.  You are really doing great so far!!!!!!!!

[lmurray69]

I am so sorry that you are not doing good.  i am still at the hopital seem to be doing ok tomorrow is the Dr apointments you can eMail me any time or call ... Prayers are with you ,,Oh I also saw scott amd stella they are reallly doing great too....YOu friend always Linda