A NEW PATIENT

[emom]

Hello Maraki! 

My 2cm by 1.8 cm AN was removed on Dec. 7th, and was sitting directly on the facial nerve.  In fact, they left 1mm  of the tumor in to avoid facial paralysis.  But I knew it was possible, and I deeply understand the depression that it can cause - I went through that depression BEFORE my surgery, worrying about it.  It is completely natural that you should be struggling with your feelings right now.  You are dealing with a lot.

Also, I have a dear friend (and his family) in Athens who has Myatonic Dystrophy, and I visit regularly.  One of the things I have always noticed is that Greece (forgive me for saying it) is not very 'current' in dealing with any form of physical difference.  I remember that I had been visiting Athens for 15 years before I saw my first wheel chair in public!  I know that your situation is not that 'noticeable', but I think that part of your fear(?) is that the general public is not very aware of physical differences caused by illness/etc.?  That is just my idea, but I know that it's part of the difficulty for my friend.  He can no longer walk, and he looks VERY ill (wasted muscles), and he always has some reservations when he has to go in public.

From your post, it sounds as though you are looking pretty good, though, and will look better in time?  One thing I can give you as a piece of advice I was given years ago "There aren't nearly as many people looking at you as you feel there are, so don't worry."  And I have found that to be true.  Most of the time, when I get self-conscious, I realize that nobody is noticing me but me!!

As for findinging someone - you will.  Work on who you are inside, and ask God to send you the right person, and He will.  Love has to be something that doesn't matter what happens to our faces, because age happens to all of us, and beauty is fleeting.  Take care, and hang in there - the depression really does get better.

 

[Kaybo]

wonderful words, emom!!

K   

[Kaybo]

I would say that it never hurts to talk to someone!  You can decide after a conversation or two whether or not they are interested in the REAL YOU!! 

I say GO FOR IT!!!

K   

[Jim Scott]

Hi, Maraki  ~

Thanks for the update!  I'm glad you're doing so well at this point.  Tumor re-growth is always a concern for any post-op AN patient but your doctor is correct that an annual MRI scan will show any growth - and if that ever happens, you can address it then.  Semi-annual MRI scans are not out of the question.  On my doctors advice, I had semi-annual MRI scans in the year following my surgery.  I'm not a doctor and cannot state at what size an acoustic neuroma has to be to become visible on the MRI scan but I wouldn't fixate on the possibility.  Approximately 10% of AN surgical patients experience re-growth but, frankly, worrying about it will not make the chances any better or worse.  I believe the only way you can stop being afraid of the possibility of re-growth is to choose not to fear what might happen (but probably will not).  Look at it this way, you have a close to 90% chance the tumor will not re-grow.  Those are pretty good odds. 

Jim

[chrisransom]

Maraki

I have been reading your posts and I have to say my welcome to you.  I hope you find peace and the information you need to make good decisions.

As far as pain, I too have some pain - not bad pain but like a little ear ache in the AN ear.  I told all of the doctors I saw about it about it but they didn't offer me any reason for it.  I don;t know if it's related to the AN or not.

Again, welcome, it's a good bunch pf people here for you.

Chris

[Jim Scott]

Hello, Maraki ~

I'm sorry to learn of your troubles with your family.  These kinds of problems happen in many families.  You deserve more attention and sympathy from your family but right now they are more concerned with your brother and his depressed state due his long period of unemployment, which is probably more obvious to them than your health problems.  That may not be fair but you can't allow your family's attitudes to make you so miserable.  Be independent and strong.  This situation won't last.  Things always change.  You are definitely not alone.  You have friends on these AN forums that care about you and are sympathetic to your problems.  Try to see the positive and know that it won't always be this way for you.  Honest. 

Jim

[Angie UK]

Hello Maraki,

I am Angie & I am English.  I felt I had to respond to you, (although I am sorry it has taken me so long, I havent looked at this section of the forum before).  I have been to Zakynthos (though we call it Zante), it is where my husband proposed to me, so it holds extra special memories for me.  It is a beautiful island & I would recommend a visit to everyone.

There is someone out there for all of us, no matter what they look like.  As we say over here, "there is a lid for every pot".  So go for it!  Sending you my very best wishes for your continued improvement.

PS your English is excellent!

[Brewers7]

Maraki,
    I am proud that you are taking positive steps.  Susan

[Jim Scott]

Maraki ~

Thank you for your delightful news.  I'm pleased to read such an upbeat post and I hope you'll continue healing and keep your positive, practical attitude.  It's very refreshing. 

Jim

[mk]

Hi Maraki,

your update is wonderful. it is so good to know that you are recovering so nicely.
My understanding is that the tarsorraphy is an entirely reversible process, so now that your eye is improving they should be able to reverse it. Keep us posted what your doctor says.

Marianna

[er]

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?
 

wonderful words, emom!!

K   

[Brewers7]

I am coming to Greece in March (Athens area).  If all else fails, I will bring you a list of my facial exercises.  I hope that you find a therapist there.  They are hard to find here.  I found one nearby who trained with Jackie Diels.  I would love to meet you.

[Brewers7]

I agree that it would be better for you to see a therapist, if possible.  I do not have Jackie Diels email, but if you search this site, you will find it.  Also, the here is a Bells Palsy site that has some exercises.  Stay in touch.  Susan

[Mei Mei]

Dear Maraki,
I'm just seeing this for the first time and my heart goes out to you and your struggles both medical and family.   Try to keep your distance and reach out to friends.   It's easy for me to say, I know, but my best advice right now is to keep a low profile right now with the family as you have your own very critical needs.   Just say yes, yes and excuse yourself from the room.   I remember many years ago my mother was rushed to the hospital at Stanford, California and she was having an asthma attack.   At that time she didn't know she had asthma.   The doctor advised her to keep away from anyone that annoyed her because she had this serious problem with her lungs.

Maybe when your seeing the therapist, you can strategize on how to accomplish this.  How to find a good therapist is the big question.   Perhaps you can google Cognitive Behaavioral Therapist in your town.   You are a lovely person and that is what counts.  If you feel that the fit is not correct keep searching.  The point of therapy is to make you feel better.

Best wishes in your search
Kali Spera!
Mei Mei