A NEW PATIENT

[MARAKI]

Hello to everyone! My name is Maria and I am writing from Greece. I am 28 years old and I was operated for acoustic neuroma 9 months ago.
I am sorry for my mistakes but I don't know the language perfect and for this reason if someone reply to me , just write as simply as you can.
I was operated somewhere in Europe, the facial nerve was cut during the operation and the anatomical continuity of the nerve has been reconstructed by a sural nerve graft. Because of this I have now facial paralysis but I can tell that I have seen an important improvement. My eye has a tarsorraphy and when the paralysis is not obvious only in calm! When I speak or laugh someone can understand!
The problem is that I feel tired! At first I was optimistic and probably that helped me, but now I feel tha my life was destroyed! I dont; want to go out and i feel difficulty in meeting new people.
I believe that nobody can understand me and i am angry when they give me advices, especially the people in the same age with me. If all these people were in my position will they continue say the same?
I dont; know what to do to help me. I am scared with the idea of no longer improvement. Do you think that I should ask advices probably in a psychologist?
 

[Kaybo]

Hi MARADI and welcome to our group!  It is great that you are seeing some improvement!  What you are feeling is VERY real and normal.  Having facial paralysis is a very difficult thing to deal with - I should know, I have had it now for 15 years!!    However, I have found that those who care about you the most and are your TRUE friends, do not really care.  It might help for you to seek out a Dr. - there are some wonderful drugs out there to help & sometimes it just helps to talk to someone.  That is what is so great about this Forum, everybody knows & understands what you are feeling and going thru.  Feel free to ask us questions and vent away here!

K   

[Kaybo]

YES, I do!  I was 25 when I had surgery so I have lived most of my adult life this way.  Think of any relationship that you have...it probably started by spending time together and getting to know one another OR on the phone (or texting in today's world!).  My sweet hubby's sister introduced us but we talked on the phone (nearly 1/2 the night) before he ever saw me!!

K   

[Kaybo]

I am married!  I will be honest and say that I had been married for 1 year BEFORE we found my tumor...BUT I fully believe that God is in control of our lives & that if I hadn't been married before my facial problems, God would have still directed my life the way it was to go.  I was a "big girl" when I met my husband and that didn't seem to make a bit of difference to him.  I should have known then that that was a sign and a messed up face wouldn't matter to him!!  I am a FIRM believer in that it is not what is visible on the outside but what is on the INSIDE that counts.  If someone is worried only on the outside packaging, you probably aren't going to want to be with that person for the long haul anyway!!  I did go on to have my 3 beautiful curly girlies AFTER I had surgery, though.

I know this is not an easy thing but try to keep remembering what a WONDERFUL person you are - the full package - BEAUTIFUL on the inside!!

K   

[chelsmom]

Dearest Mariki,

I'm sorry you are feeling so hopeless.  Donnalynn and Kaybo have given you some excellent advise but I do know that some days are too hard to deal with and listen to what others say.  I know this because my daughter, Chelsea 22 years old, has these days. 

She has been through several AN surgeries and radiation.  Her last surgery in 2009 left her with facial paralysis (right side) and now after 18 months post-op she is about to do the facial nerve graft surgeries.  Her surgeons are actually considering the 7-12 jump along with the cross facial nerve graft.  Her doctors have told us that after the nerve graft it will take 9-18 months before there is any movement and if that doesn't happen then there are other options to explore.  I agree that 9 months is not that long and because you have had some movement this is a great indication that the graft is working.  Some of the people on this site are seeing improvement 2-3 years after their nerve surgeries.  Always be hopeful!!!

I know that it is hard to think that there is someone out there that will see your beauty beyond the paralysis, someone that you want to notice you, but there is that special someone that will find you.  I believe that Chelsea feels this way sometimes but she fights to stay positive and hopeful.   

Please hang in there...things will get better!

Michelle

[CHD63]

Hi Maria and welcome to this forum.  I am so glad you found us and joined us.

As you can already see, there are many of us all around the world who have had acoustic neuromas and we are going on with life.  Each of us has a different story to tell but we can all share in how this tumor has changed our lives.

Kay is an excellent example of how her acoustic neuroma was found at a very young age, like you, but she has had a beautiful life of giving and loving others.  You will too.

As Donnalynn said nine months out from surgery is still quite early in your facial recovery.  Many people on this forum have experienced improvement for months, even years, after surgery.

It is natural to feel angry after something like this.  My prayer is that you will be able to work through your anger and see how you can turn that energy into positive thinking about yourself.

Many thoughts and prayers.  Clarice

[Brewers7]

Maraki,
     Welcome to our forum!  Your English is fine.  We can understand you.  I have never been to Greece but I have always wanted to travel there.  Kaybo and Donnalynn gave you good advice.  I still have some facial paralysis but I began to notice some improvements at about 10 months.  You are still very early in the healing process.  I said a prayer for you today.  Please stay in contact.  Susan

[Kaybo]

Don't be a stranger, MARAKI, we are here for you!!

K   

[mk]

Hi Maraki,

Don't hesitate to ask for translations in Greek! You know that I can help you out 

Marianna

[moe]

Hi Maraki,
Welcome to the forum from another person who really  understands what you are going through. I had to have my facial nerve cut and I'm sure went through mourning for my old smile.

I was happy to be alive, then I started getting depressed, then mad, yet I knew that I was lucky to be alive without any major complications. My tumor was a bloody, medium large tumor, that was pressed against the brain stem.

It wouldn't hurt to go to a psychologist or psychiatrist to talk through things. It is completely normal to be depressed after a life altering event!

My medications keep me going

You will probably find that improvement will be noted, so slow it is though. Patience is key, and that is hard, especially since you are young and want to "get on with your life."

9 months is still short time in recovery. May take up to one year or longer just to get that energy back and to feel less tired.

Hope to hear from you some more!
Maureen

[Kaybo]

Medicine can be a GREAT thing and is certainly needed in some (AN) cases HOWEVER don't think that you HAVE to have it to survive an AN!!

K   

[Mickey]

From  a males point of view... I`ve been around for quite a while (62 years). For approx. 4 years now have been diognosed and involved with alot of AN things. One of the most memorable things to me is is the beautiful people (especially female) inside and out that I have encountered. I`m happily married and can tell you one thing, my highest reccomondation would go to the girls (guys too) who I`ve met along this journey. Best wishes, Mickey

[nancyann]

Maraki:  I can totally relate to how you are feeling - I also have (right sided) facial paralysis.  But you are younger than me,  I know this is harder for you.
There are surgeries out there for you if your face doesn't come back.  You will have to go to Johns Hopkins for the new T3 surgery, if you can't find a Dr. closer who does this surgery.  You will feel like yourself again.
Write to Dr. Patrick Byrne, he will help you.  You can also email me if you want to do the surgery.  I'll be there to help you.
Always good thoughts,  Nancy

[JudyT]

Hi Maraki......I am Judy in California USA....I had cybernife about 6 years ago...I have many issues .....balance loss mainly. Be patient with yourself....give time a chance. This is a wonderful option for you to use...people share, have helpful ideas and are the best listeners ever. They are the most compassionate group you will encounter. They "GET IT" when others don't. Everyone seems be a bit different with results....no two exactly the same...but all of us have the fears, concerns and questions. It's a blessing to come here.....please use it as often as needed.
A friend across the miles.....Judy

[moe]

Marakai,
So glad to hear you are feeling better!
I can say from experience that there are good and bad days, hope along with frustration and discouragement. Lots of feelings, all normal.
It just takes time, and lots of it.

Important to keep on living and doing fun things (which you are) and make sure to treat yourself to little things frequently.!

Continue having fun!
Maureen