Treatment Options > Microsurgical Options

I'm baaaack!

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oHIo:
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

leapyrtwins:

--- Quote from: oHIo on April 06, 2008, 07:53:43 pm --- I also believe that in spite of everything, a sense of humor can get you through the rough days.   ;D

--- End quote ---

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

Kate B:

--- Quote from: oHIo on April 06, 2008, 07:53:43 pm ---  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

--- End quote ---

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

sgerrard:

--- Quote from: oHIo on April 06, 2008, 07:53:43 pm ---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.

--- End quote ---

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

lori67:
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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