Author Topic: Newcomer  (Read 2463 times)

Unjaded

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Newcomer
« on: January 02, 2013, 11:02:47 am »
Hello all. I had a 3 cm tumor removed on November 27. Developed a CSF leak and had an additional surgery to correct that on December 12. My facial nerve was tangled up in the tumor and as a result the nerve was completely severed. Nothing on the right side of my face moves. The doc grafted the ends of the nerve back together but it could be 18 months before we know if it worked. I've been feeling zaps and tingles on my lips and tongue on the affected side. Is that a good sign?
This ordeal has brought to the lowest point in my life, physically, emotionally, mentally, spiritually, etc..... I was a complete mess after the second surgery. I'm 42 and had only been hospitalized to have my babies so you can imagine how I've dealt with this. Until this tumor I was the independent one, the one who never got sick, the one my family and friends could always count on. It has been a huge struggle for me to accept that I am no longer that person. I'm completely deaf in my right ear but hearing loss was the first symptom I noticed nearly 3 years ago. As it happened gradually, its something I was use to before the surgery so it's easy to deal with. 
I feel better now than I did 2 weeks ago but I'm so worried about my facial issues. Especially the eye! It's amazing the things you take for granted in life.

DHJ

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Re: Newcomer
« Reply #1 on: January 02, 2013, 03:39:45 pm »
 Hi  I am so sorry to hear about your difficult complications. It sounds like you have had a rough time and I know that it can be hard.Nov 4 2011 I had a 3cm AN removed and also needed a second surgery to clean out my meningitious infection. My many complications left me in tough shape. One year later I have recovered quite nicely and while I live with a eyelid weight,weakened facial muscles, and other defecits life is good and my Tumor is gone.I hope and pray for a good recovery for you also. Give it time and stay strong.
    My facial nerve was intact but stressed during surgery. As it recovered I did experiance tingling and twitching which has proven to be a good thing.     peace Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

millie

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Re: Newcomer
« Reply #2 on: January 02, 2013, 04:10:35 pm »
Hi there-I too am sorry to hear of your experience with and after surgery.  I had trans-lab October 17th and it is taking more time to revover than I thought.  My facial nerve was also stressed and my face had facial and eye droop after surgery.  I was 60 per cent deaf in the left ear presurgery, and I thought the same-I wouldn't miss the rest of the hearing that much-but it is all such an adjustment.  Some people  take longer to heal than others.    I too was pretty independent, a multitasker, just retired schoolteacher who basically loved being really active with the grandkids whenever I could steal them.  Now it is a little different.  I miss driving and I get fullheaded after a few hours in a store.
I was pretty down after surgery-I even wondered if I would walk, but I did after two days. I was told my face would come back and more of the muscles are working, the droop is much better.  I need to put drops and ointment in the affected eye but it looks and acts better than it did.  If you didn't know it, you'd never know I had surgery.  The numbness is just where the incision is and my ear both feels, and tingles and today has a little pain on the inside. 
DHJ says stay strong and  give it time.  We have to be patient(my husband is always telling me I am not patient enough) and it is hard when we are used to doing everything for ourselves-especially so for you with your children.  I hope you have help with them now.
All I can say is it is better than it was October 21st, and if it is better in 18 months, I will be very happy.   God remember us. 
Mil
Let's pray for good recoveeries

leapyrtwins

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Re: Newcomer
« Reply #3 on: January 05, 2013, 07:02:15 pm »
Unjaded -

have you read any posts by Kaybo?  She's one of the most courageous and inspirational people I've ever met.  I met her on this Forum and then in person at the ANA Symposium in Chicago in 2009 (I think that was the year).

Anyway, it might help you to read some of her posts.  Here are a few that you may find heart-warming:

http://www.anausa.org/smf/index.php?topic=17243.0  (check out the video)

http://www.anausa.org/smf/index.php?topic=18169.msg979749963#msg979749963  (see her response)

http://www.anausa.org/smf/index.php?topic=18135.msg979749913#msg979749913  (see her response)

Hope this helps your spirit,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mikechinnock

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Re: Newcomer
« Reply #4 on: January 10, 2013, 03:26:26 am »
Nice links. Yes, is the glass half full, or is it half empty. How I choose to look at it affects my emotions, for which I am powerless over. Life is a dynamic process and an AN is a big change to accept. It can take time to get to that point. It helps having fellow travelers I have found.
« Last Edit: January 10, 2013, 03:28:16 am by mikechinnock »
In the valley of the blind, the one eyed man is king.