ANA Discussion Forum
AN Community => AN Community => Topic started by: deborahgordon on October 18, 2013, 02:08:09 pm
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I read everything I could on AN's. I read updates from those who have gone through surgery and how they are doing now. I am prepared but.....I am scared. Surgery is scheduled for Dec 3rd. I wish it were sooner as the more I think on it the more panic sets in. I hope not many people lose their life from this surgery, I haven't seen posts showing any kind of percentage so I'm going to convince myself its probably 99.9% survive. From posts of those survivors it looks like many recover almost completely and live almost normal lives post surgery. I finally have 2 doctors i feel comfortable with and trust. I am hoping for the best outcome, but because of the size and position I know my hearing wont come back and severe facial nerve damage, I am preparing for poor outcome. Wish me luck and a speedy recovery as I want to be there for others as they face this. It is hard facing this alone. I am not married and friends who were close backed away as I became more home bound due to falling and balance, and maybe the feeling if they stay away it can't happen to them. I do not ever want to see someone face this alone and I am so thankful for this organization, it helped me and I will pay it forward. I don't discuss this with my daughter. She will be there for the surgery, but I don't burden her with my fears as I don't want to set hers off. She has always seen me as strong and counts on it. thank you for letting me vent some it helps, Deborah
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I am glad we can be here for you. Sorry you feel so alone. I've never heard of anyone dying from this surgery. Let us know what you need. This is a great place for information and support. Do you live where there is a local support group? With caring, karen
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Deborah, It is difficult to predict outcomes from this surgery. I knew my hearing nerve would be sacrificed and my balance nerves as well. But some concerns I had did not occur and some complications I had never thought of
did happen.
It is easy to let our imaginations picture possible consequences, but many complications from AN removals are temporary, others are treatable and improve, and some we just adjust to because we get used to them.
Recovery is different for everyone, but we do recover and so will you. I think you may be surprised when the surgery is over and you know what you are dealing with, just how well you are able to cope. Good luck.
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thank you both for your responses. I found this site on my own, but would hope one day doctors would give this info to patients when they are diagnosed. between the resources and the blogs I was able to be well informed and able to make solid decisions about my care. I am also glad to have met people who will listen if an ear is needed and encourage when bad days come. Thank you, deborah
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Hey Deborah! Glad to meet you and congrats on the date! You just possibly have gone over the hardest hurdle in this whole process...trying to decide what to do with your AN. Now you can sit back and let everyone else take care of YOU! Just trust your decision (no second guesses) and just try to do things you normally would do. Also, Some say getting out and getting more exercise helps in a multitude of ways, especially if you are nervous. And you did discover a good side benefit of this forum, it is indeed a great place to vent! Good luck and keep posting when you need to! :)
Jay
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thank you. i have the results of the last MRI and the tumor is 3.0cm X 1.2 cm. from what they can see it is wrapped around the facial nerve also, but they can still go in through the side so I am very happy. Keeping busy with mother/daughter time and dinner and movies and with the grandsons. planning to cook for thanksgiving and having family and friends drop by for a toast as it will be the last weekend before the lump gets plucked out. thank you for the support, deborah
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Congrats! It sounds like you've made your decisions and now you can go back to living life in the present.
With caring, Karen
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Dear Deborah,
I know what you are going through It seems now like ages ago (it was 2004) that on my first interview with a neurosurgeon that he told me that because my tumor was so large(3.1 cm) that there was a 1 percent chance that I would die. That sent me into a panic, and I spent the next six months searching the web at the time for some more hopeful news.
Rest assured, you have the rest of us to tell you it is more important to concentrate your energy on the 99.9% than it is the minimal percentage. Unlike you, I didn't discover this site until long after my surgery in 2004. I eventually found it in February 2012 and talked it out with others who were here about my treatment options for Gamma Knife radiation.
You are about to go on a journey that few of us in life ever get to go on, this will give you a chance to slow down and reprioritize your life! Take it!
You will be disillusioned at first at others who will appear not to be able to handle your difficulty! This is the most disheartening! Don't worry, others will show themselves soon to be more faithful to you!
Even though, it maybe of little comfort to you, you will always have us online here who are each at different stages of our journeys as well to keep you company.
Finally, welcome!
Mike
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Hi, Deborah ~
I just wanted to let you know that you'll be in the thoughts and prayers of many before and during your scheduled (December 3rd) AN surgery.
Few AN post-op patients end up needing a wheelchair and many enjoy a full recovery, as I have (4.5 cm AN, surgery + radiation). 'Dying on the table' during AN surgery is hardly a concern. The mortality rate for AN surgery is about 5%. http://www.ncbi.nlm.nih.gov/pubmed/21856684 (http://www.ncbi.nlm.nih.gov/pubmed/21856684).
Although I was well aware of possible complications, thanks to the prayers of many people (and my own) I went into the OR with a very positive attitude. When I had no post-op facial nerve issues or other problems, I was grateful but not terribly surprised. However, expecting 'the worst' is often a good hedge against the possibility of being devastated if any post-op issues do arise. I certainly hope that doesn't happen. Try to remain positive. :)
Jim
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Here is what I have for positives 1) if half my face is paralyzed then when i get a facelift it should be half price right? I get to save money. 2) I have never been able to do the one eyebrow lift or wink one eye, so i am excited that I will finally be able to do this. 3) they say for the first few weeks nausea sets in, so I have been planning my diet and this is a bonus to get me started. Finally and most important, It is not a death sentence. I will adjust my life and my goals for my future and I will be around to see my grandsons grow up. I cannot go back to the career I had before but maybe it was the push I needed to try something new. The waiting is the worst part. I am ready to start my new life. Thank you all for your words of encouragement. I cant wait to start a support group in my area as soon as I am on my feet.