ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: MARAKI on January 15, 2011, 10:59:24 am
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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?
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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 ;D
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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 ;D
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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 ;D
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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
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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
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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
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Don't be a stranger, MARAKI, we are here for you!!
K ;D
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Hi Maraki,
Don't hesitate to ask for translations in Greek! You know that I can help you out ;)
Marianna
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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 :D
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
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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 ;D
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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
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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
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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
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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
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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.
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wonderful words, emom!!
K ;D
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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 ;D
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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
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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
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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
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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!
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Maraki,
I am proud that you are taking positive steps. Susan
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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
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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
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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 ;D
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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.
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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
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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