ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: oHIo on April 06, 2008, 07:53:43 pm
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I apologize for my long absence but when you hear my story, maybe some of it will make sense. I am still trying to sort out the whole story and not sure I ever will. Let me add that I appreciate your prayers and well wishes and believe that my connection to this group helped me through some very dark days.
I had my right approx. 2cm AN removed via TL on March 20th after it was noted my AN had gotten bigger per MRI and I continued to experience disabling vertigo. My surgery ended up being 8 1/2 hours and I had intraoperative bleeding, which was controlled, but my tumor had done some real work on my facial nerve. Instead of my nerve being nice and plump, it was flattened out and the tumor was very adhered. Resection was difficult, but I evidently woke up will full facial nerve functioning. Let the complications begin...
My facial nerve issues became such that at one point I remember having a lot of difficulty even swallowing. After discharge from ICU, I became mentally confused from the high doses of steroids and evidently became the next American Idol, bursting into song (some gibberish of children's tunes) on a regular basis. I developed a corneal abrasion and I guess I was so confused my vision was questioned at one point. My eye is still sewn shut and hopefully that issue willl be resolved tomorrow. As if things weren't interesting enough, I developed a CSF leak and ended up with a lumbar drain, which I managed to rip out stitches and need resutured. My total hospitalization was 11 days, most of which I don't remember. The day following my discharge, I ended up back in the emergency room with the site of my lumbar drain flowing cerebrospinal fluid, needed stitched and yet another CT scan of my head.
In spite of everything, I believe I am doing well. My family is still trying to help me piece together many forgotten days. I guess in my confused state I became the life of the party and did many things totally out of character for me. I do remember snippets of some of them and remember seeing Ohio Also in the hospital. I believe in my case having surgery close to home with family beside me was what got me through and alerted the doctors that something indeed was wrong. While I evidently could answer all of the standard questions without fail (I am a nurse well versed in the standard neuro check questions) my family knew me well enough to know that some of my responses and questions meant something abnormal was happening. I had a wonderful team of doctors and nurses who listened to my family which most likely saved my life.
So you just got the Reader's Digest condensed version of my last 2 weeks. Please feel free to ask any questions. I believe knowledge is power and I believe it is important to go into any treatment with a full understanding of the risks and benefits. Would I have surgery again, knowing what I know now? Without a doubt. Would I stay close to home and choose the same facility/team of doctors? Yes. Do I have any regrets? None whatsoever. I willl heal with the love and support of my family and friends. I am changed by this experience, not necessarily for the worse, in spite of my different abilities. I have a much stronger sense of love and friendship and the power of prayer. I have recieved gifts from people who I don't even know and I have had the opportunity to be able to tell my friends how much I love them. I will never again take sucking from a straw for granted (I'm getting better at it every day) and cannot wait to be able to see again with both eyes, as this seems to be hindering my recovery the most. I also believe that in spite of everything, a sense of humor can get you through the rough days. ;D
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I also believe that in spite of everything, a sense of humor can get you through the rough days. ;D
oHIo-
it's good to see that despite everything you've been through recently, you are getting past the tough times. A sense of humor certainly can help.
My AN too, grew between my MRI and my surgery, which was only about 6 or 7 weeks. Go figure!
Your recovery story is so unusual - I've never heard of some of the things you mention - like breaking into song. To the amusement of my family, and my boss who I talked to via phone from the hospital, I had a voice like Mickey Mouse post op but I didn't sing ;D
You are very fortunate that you had surgery locally and that your family was, and is, there to support you. And I think it's fabulous that you don't regret choosing surgery.
Hopefully the rest of your recovery won't be as strange as the beginning of it was.
I'll continue to keep you in my prayers,
Jan
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I believe knowledge is power and I believe it is important to go into any treatment with a full understanding of the risks and benefits. Would I have surgery again, knowing what I know now? Without a doubt. Would I stay close to home and choose the same facility/team of doctors? Yes. Do I have any regrets? None whatsoever. I willl heal with the love and support of my family and friends. I am changed by this experience, not necessarily for the worse, in spite of my different abilities. I have a much stronger sense of love and friendship and the power of prayer. I have recieved gifts from people who I don't even know and I have had the opportunity to be able to tell my friends how much I love them. I will never again take sucking from a straw for granted (I'm getting better at it every day) and cannot wait to be able to see again with both eyes, as this seems to be hindering my recovery the most. I also believe that in spite of everything, a sense of humor can get you through the rough days. ;D
Welcome back. Thank you for sharing your story and your reflective thoughts. I couldn't agree more that we are all changed in someway by our AN experience and really don't take things for granted as a result--both people nor being able to do things.
All the best as your recovery continues.
Kate
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I am changed by this experience, not necessarily for the worse, in spite of my different abilities.
I have a much stronger sense of love and friendship and the power of prayer. I have recieved gifts from people who I don't even know and I have had the opportunity to be able to tell my friends how much I love them. I will never again take sucking from a straw for granted (I'm getting better at it every day) and cannot wait to be able to see again with both eyes, as this seems to be hindering my recovery the most.
I have expressed a similar sentiment to your first line - that I am some how better off now than I was, despite having an AN. Much of it has to do with relating to other people better, and discovering that when you do that, they connect with you better as well.
I can't say I use a straw very often anyway, so that doesn't seem so bad. The eye thing, on the other hand, gives me the willies. I use an eye drop to control eye pressure, and have poor eyesight as well. I would want vision back first and foremost; that would drive me nuts.
It sounds like you made it through despite the hurdles. I hope someone has a tape of you singing, we would all love to hear it. :D
Welcome back.
Steve
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oHIo -
I'm so glad you're home and healing after that adventure! I'm also glad you have been able to maintain your sense of humor through this all!
Sounds like Murphy's Law was at work there - everything that can go wrong, will... I guess the bright side is that you don't remember it all. Especially the American Idol part. I don't know what your voice sounds like, but I know I'd be rather embarrassed.
Continue healing!!
Lori
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Glad your healing and your positive attitude will benefit others on their journey. I too found humor took me over the "bumps" and may you continue to heal rapidly.
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oHIo~
So glad you are back -- your story almost mimics mine exactly EXCEPT i didn't have the leak and i didn't get my eye sewn shut until after 3 months and the biggie: YOUR FACE STILL WORKS!! WOO-HOO!! I, too, was quite the singer...the funniest thing was when they were trying to get me to go to the bathroom after they took the cath out -- I sat on that potty FOREVER! My brother and his wife were with me at the time, as my mom & Dave had been there all night. I started singing songs that my brother & used to sing together when we younger (Miss Lacey had a baby...) anyway I kept saying something and they couldn't understand what I was wanting to sing next...then I started signing the jingle from an old Orkan commercial (loudly, I might add) "Orkan, we're #1, we get the job done, we're ORKAN..." -- and I started tee-teeing!! Quite the story! Only one of many stories that they still love to tell about my time in the hospital!! Their time is coming...mine was just a LOT earlier than theirs!!
I know you are glad to be home and be surrounded by loved ones!!
Keep up the positive attitude!
K
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So glad to hear from you!! Boy did you have quite a rough time, but despite everything you sound like you have a great, positive attitude. I had my surgery 1 day before you. Hang in there. It get better every day.
:)
Mary
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I am sooooo' glad you are doing well and you have an AWESOME attitude.
I am a little worried though since I am still sitting on the 'pre-treatment' side of the fence. You are an inspiration though and I am glad you are home!
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Wow.....
Glad to hear you are doing good now !!
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Okay, so where does this need to sing come from? Anyone know? ???
I just think it's so unusual - and to have two of you who went through it.
Very interesting!!
Jan
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Wow, Ohio - what a story! If it's okay with you, I'm going to try NOT to top your experience! Thank goodness you had your family by your side.
You have an amazing attitude! Thanks so much for sharing the story.
BTW, I was apparently singing during and after my colonoscopy a couple of years ago - so maybe it has something to do with anesthesia? I don't remember a bit of it, but my husband won't let me forget!
Ohio, continued good wishes and prayers to you.
Debbi - B minus 23 and counting down...
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oHIo:
Welcome back! You certainly had some complications and an interesting experience in the hospital, with the impromptu singing and all, but I'm glad to read that you came through it and are on the mend, with your sense of humor intact, even if your eye is sewn shut. :)
That you feel somehow improved by your AN experience is not uncommon (I feel that way too) - but still good to know.
That you are confident in the decision you made regarding treatment, doctors,hospital, etc is an indication of your own confidence and the choices made based on your medical knowledge. The power of prayer is awesome and has benefited many AN patients, including me. I'm pleased to see that you recognize this. I trust your post-op complications have now come to an end and that your recovery will proceed apace from this point on. Thanks for telling us your story and demonstrating your positive attitude under stressful conditions. We can all use that kind of inspiration so it's much appreciated here.
Jim
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Thanks again to everyone. You are such a wonderfully supportive group. I have been spending my spare time at follow up appointments. My darn face has decided to take a rest from everything and I am a 5/6 for facial nerve function. I could live with the facial nerve issues, except for my eye. The ophthalmologist removed the temporary tarsorrhaphy but I still have no blink. While my cornea looks good, they are considering another tarsorrhaphy tomorrow so I will not have any eye damage when my facial nerve function returns. I believe I am getting better every day, I'd just like to be able to see with both eyes. My balance is not great, but having balance issues along with my eye taped is making me crazy(er).
As far as the singing ::) I have no idea where that came from. I am well aware I cannot sing. I'd love to be able to (maybe I was fulfilling my secret wishes) but do not sing in public because unlike some Idol contestants, I am well aware of my musical limitations. From the sounds of it, I was having a good time. And thank goodness, NO there is no video or audio tape. My family reminds me frequently enough of some of my antics.
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oHIo~
Take the eye stuff now to protact that cornea for later!! I know that you know that, but oh, it is SO much better!! Give it time...
K
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oHIo, I desperately try to keep up with everyone around here but sometimes, I don't always succeed... but did want to say welcome back! Pls hang in there and know I'm sending wellness thoughts your way.
Phyl
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good to hear from you oHio, I can related to the eye thing too. I am almost two weeks post-op and can only see clearly out of one eye (with glasses). It makes the balance even worse. Hang in there, I go for my visit today and that is one of the questions. I think some of the anesthesia drugs lower our inhibitions. I woke up from having my wisdom teeth out at age 18 talking about having babies (didn't have a baby until I was 30!). thankfully I was mumbling and I don't think anyone could understand me. Glad you are doing better.
Hope