Author Topic: The is life after AN. My message of hope for everyone here suffering from this  (Read 1394 times)

waypoint

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Happy New Year to all my AN brothers and sisters. I had my AN removed in 2007 via RS and it's been about 8 years since I've been back on this forum.  I've been through the highs and lows and ups and downs.  I don't even try to hide my scar anymore.  Yes, I have SSD left side and partial facial paralysis.  It's still there although people say they don't even notice.  I know its there.  It's been 12 years and I still work to improve my facial paralysis, my balance, my SSD...  Over the Holidays, I received a personal email from someone here going through what I went through and in responding, I decided to come back and post here.  If not for anything, but just to offer a message of hope to everyone.  There is life after AN and it can be good and fruitful.  Never give up.  Always know that things will get better however slow and however long it takes. Just never give up. Life will never be exactly as it was, we have to adjust to our new normal and work at it ever day.  People at work don't realized that I have to work twice as hard sometimes to I'm willing to try.  It's taken me many years, but I have adjusted to my balance issues and am back to skiing and snowboarding. 

This year I am turning 50yr and we just spent the holiday's in Purgatory Ski Resort.  I was snowboarding in my 20s before it was even popular.  It's taken me a while, but it's great to know that I can still do it, even with all the side effects from AN.  Here are two videos I made of me snowboarding from between Christmas and New Year.  Yes, that is me filming and riding and yes I am a 2007 AN survivor. I refuse to give up and you should too.  I pray for the best for everyone here whether you are starting this journey or post op and recovering from AN. 

Purgatory video montage. Beautiful day at Purgatory Ski Resort with family:
https://youtu.be/VpSJ8ry3cxo

Me doing a snowboard run from top to bottom on New Year's Day in Purgatory:
https://youtu.be/YM0lCxq4-xw

The one tip I want to share is, don't be discouraged by the negative news on many forums.  Many people that recover will move on with their new normal and you don't here from them.  Much of what you read can be stressful and scary.  Know that sometime forum are not always balanced.  Not being disparaging against a forum. These forums are a wealth of knowledge and a great support system.  I am thankful for it and that is why I'm back to share a message of hope. Thanks.

2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

judyette

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Thank You so much for this post!  I really enjoyed watching those videos.  I have never skied or snowboarded, but it looks exhilarating!  As someone who has significant balance issues, I am happy to See that it can get better.  I've debated about selling my bike, no way I can ride it now.  But this gives me hope that I may be able to in the future, so I think I'll just keep it :)
Thanks for coming back to post this!!
judyette

Jill Marie

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Judyette,  By all means keep the bike, I didn't think I could ride again either or at least not very far.  Eventually I rode 40 miles one day on a beautiful trail in Idaho.  Of course everyone is different but there is always hope.  My thinking I couldn't kept me from riding more than my balance issues.  Good luck, Jill

Waypoint, thanks for sharing your story and encouraging words, I'm sure it will help a lot of the new people on the board and the old timers like me too!  Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

jami

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To pile on to this message of hope - i read an article today about Walk Whitman on What Makes a Life Worth Living.  I had not realized he had a stroke in his early 50s which is what let him to rethink his live, and build the connection with nature.

I dont want to rewrite the article, but i encourage people to read it.  It helps with perspective on those tough days.

https://getpocket.com/explore/item/walt-whitman-on-what-makes-life-worth-living?utm_source=pocket-newtab

Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm