Author Topic: Hi, I am new to the forum  (Read 4060 times)

lydiapyn

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Hi, I am new to the forum
« on: April 23, 2012, 11:17:43 pm »
Hi, my name is Lydia, I am 31 years old and a mother of 3 great kids. I was dignosed with Acoustic Neuroma when I was 21 and when they found it, I had it removed the following week. The tumor was very large and the doctor said if I didn't have it removed then, I would have died within the next year. When I heard this, I was in shock, I couldn't talk or function right, I didn't know what to do, I had just had my first baby the year before and I didn't want to leave him and my whole family was in total shock along with me, I had the surgery, I was in the hospital for a week and off of work for 2 months. The doctor said it would take up to 18 months before any function in the face would come back. The surgery was in May and that October, I had to have another surgery to put in a disk in my ear canal due to the first surgery they took out the bone behind the ear to get the tumor out and it caused my ear to go deaf. And at this time, I was so hoping I would be done and just do the wait and watch game. Well I did just that and went to the doctor after the wait period and no function had come back. So they sent me for another MRI and to find out when they did the first surgery, it started to come back. Talk about a real shock to the system I'm telling ya. I couldn't stop crying and I had my mom sick at the time as well. So I had it done again. People say to me they don't know how I did it. And honestly, I ask myself that same question, I had a special person in my life that made me fight to stay with him, and that's my son Michael. He gave me the courage to fight this and till this very day I am still fighting this because there is still no change in my face and am hoping one of these days I will start to feel better and not look at myself in the mirror. I hope to hear from somebody out here who knows what I am going thru and I can talk to.

pjb

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Re: Hi, I am new to the forum
« Reply #1 on: April 24, 2012, 06:40:53 am »
Hi, my name is Lydia, I am 31 years old and a mother of 3 great kids. I was dignosed with Acoustic Neuroma when I was 21 and when they found it, I had it removed the following week. The tumor was very large and the doctor said if I didn't have it removed then, I would have died within the next year. When I heard this, I was in shock, I couldn't talk or function right, I didn't know what to do, I had just had my first baby the year before and I didn't want to leave him and my whole family was in total shock along with me, I had the surgery, I was in the hospital for a week and off of work for 2 months. The doctor said it would take up to 18 months before any function in the face would come back. The surgery was in May and that October, I had to have another surgery to put in a disk in my ear canal due to the first surgery they took out the bone behind the ear to get the tumor out and it caused my ear to go deaf. And at this time, I was so hoping I would be done and just do the wait and watch game. Well I did just that and went to the doctor after the wait period and no function had come back. So they sent me for another MRI and to find out when they did the first surgery, it started to come back. Talk about a real shock to the system I'm telling ya. I couldn't stop crying and I had my mom sick at the time as well. So I had it done again. People say to me they don't know how I did it. And honestly, I ask myself that same question, I had a special person in my life that made me fight to stay with him, and that's my son Michael. He gave me the courage to fight this and till this very day I am still fighting this because there is still no change in my face and am hoping one of these days I will start to feel better and not look at myself in the mirror. I hope to hear from somebody out here who knows what I am going thru and I can talk to.

I had to respond to your story my gosh you have gone through so much and yes you will get through this you have 3 children that love and need you no matter what. I am sure others will chime in that have gone through the same soon we all have different but yet similar outcomes and this and other sites are great to know that we can all relate and truly understand. My prayers and thoughts are with you and thank God you are still with us and will be for a very long time...

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Chances3

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Re: Hi, I am new to the forum
« Reply #2 on: April 24, 2012, 11:11:31 am »
Hi Lydia,

Wow what a story !  You're a brave woman. My health problems cannot compare to yours, but I did want to respond with some words of encouragement.  I hope other members who have had experiences closer to you will respond with advice and encouragement.  I had a very long recovery after surgery and two things really motivated me to get healthy and return to work.  I have a very sick wife, so it is important that I have health care benefits and make a decent living to provide for her needs.  My youngest son is still in college and I wanted to continue to help him.  Hang in there, keep on figthing, although it sounds like you are a real fighther already.  Do whatever you have to do to make yourself better, even seeing other doctors if that will help you.  FYI - my first son is named Michael.  I will keep you in my prayers for healing and encouragement.

God Bless.

Suu

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Re: Hi, I am new to the forum
« Reply #3 on: April 25, 2012, 02:09:40 am »
G'day Lydia

I am 2 years down the track from having my AN out and I had my facial nerve stretched so much that I ended up with facial palsy (drooping of the face on the left side).

There are many things that doctors are doing for this outcome now and a couple of them have been done to my face with great results.

First I had a 'sling' put in.  This was done by taking a tendon from my leg and put into my face to lift my lip and chin to a more normal appearance.  It was done while still hoping that the facial nerve would come back.  It didn't.

This site is basic - http://emedicine.medscape.com/article/879584-overview
This one has a lot of different offerings - http://drboahene.com/facialparalysis.aspx

The next procedure (a lovely alternative word for more surgery  :P) was the 12/7 nerve graft (Hypoglossal to facial nerve transfer) where the surgeon joined up the facial nerve to a nerve in my tongue.  This was done in February and will take about 12 months for me to see the full benefits.

http://emedicine.medscape.com/article/1289133-overview
http://en.wikipedia.org/wiki/Smile_surgery

My left eye was drying out due to not being able to blink well or close it properly at night so my eye surgeon put a couple of stitches in the outer corner to make it close a little bit to keep it from drying out as much.  I still have to put drops into it but not as often.
If your eye is affected then your doctor may opt to put in a small weight in the upper lid to help it to close and protect your cornea.

I hope this information hasn't scared you.  I put it here so you can get a little bit of information.  Your doctors can tell you a lot more and I wish you all the best of wishes and luck.

We are lucky to have you here with us and telling us your story.  Many thanks for being brave and hugs to your son.

Lovenhugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12