Author Topic: Questions from The Boss - Stoneaxe's better half...  (Read 4341 times)

MAlegant

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Re: Questions from The Boss - Stoneaxe's better half...
« Reply #15 on: May 16, 2009, 04:14:42 am »
So much good advice; nothing left to say.  Except, good luck and we'll see you on the flip side!
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Rich56

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Re: Questions from The Boss - Stoneaxe's better half...
« Reply #16 on: May 16, 2009, 03:12:16 pm »
Hi Boss,

Glad to have you aboard, just be yourself and you’ll do fine with the updates.  There is no right or wrong way to update, nor any question you can’t ask.

As Scarlett’s caregiver, I’ll try to answer your questions from my perspective.

1. How long is the typical length of stay in intensive care unit, then in the hospital? Scarlett was in ICU through the night and went to her step-down room late the next morning.  She went in for surgery Wednesday morning and came home Saturday at 1:00 p.m.
2. Post op care at home, should I ask for a visiting nurse, will he go to a rehab place before he comes home? No rehab facility or nurse necessary in our case.  I know Bob is a big guy, but as long as he can stand on his own you should be fine.
3. Do you think it is too bold of me to ask the docs, what their success rate is and how many of these operations have they done? (he is seeing McKenna MEEI and Barker MGH). I don't think it's too bold.  We asked those questions ourselves.  Dr. Barker told us he had done hundreds of AN surgeries, with varying success rates.  As you know Boss, no two surgeries are the same.
4. What are common ailments should I look for when he is home that would be of concern? The obvious one is, if he has no facial paralysis when he comes home and then it appears.  They say this is usually temporary.  Also watch for a fever.  Ask Bob what and how he’s feeling and keep a log.  Headaches, dizziness, and fatigue are normal.  Ask the Drs., who you can contact if you need to get a hold of someone, and don’t be afraid to call them.
5. Side effects, they mentioned a thing called a CSF (?) leak!!! How would I know what to look for? We were told it rarely happens once you are discharged, however I read on this site somewhere that it is an extremely runny nose when leaning forward from a sitting position with your face to your knees.
6. How long does this surgery take? They say 6 to 8 hours, Scarlett’s was 9 ½ hours, and I know there are others that have been longer.
7. Will he need any special medical equipment, wheelchair, or something to prop him up at night when sleeping? If he is too off balance, a shower seat, cane, or walker would be helpful.  They may not be needed at all, you just don’t know.  Scarlett just used varying combinations of pillows to get the right elevation.
8. Do I have to wake him up through the night or if he falls asleep during the day? He will need lots of rest.  Listening to his body when it says, “hey, that’s enoughâ€? will be the smartest thing to do.  He will need to take his meds “on timeâ€?.  I set my alarm and got up with Scarlett when it was time for meds, and logged what she took and when.  Believe me, you don’t want to fall behind on the meds, at least in the beginning.
9. Should he be left alone at home, if I need to run to CVS for a prescription should I leave him alone? Absolutely not!! Neither of you know what to expect in the beginning.  I had someone stay with her when I needed to step out.  You will have to use your own judgment on when he can be left alone. 
10. I can take time off from work, that's not a problem, I just thought someone out there might know how much time I should ask for off. I took three weeks Intermitting Family Leave from work, but told them I really had no idea when I’d be back, it turned out to be just about perfect.  Each recovery is different.
11. Wound care: will he have drains...should I have a nurse do whatever needs to be done? I can’t help here, Scarlett didn’t have any issues.
12. How long is the surgery... it's a translab procedure...

I think I should probably end here, as I've taken up too much of your time already.  If you have the time I would really appreciate hearing back from you...... thanks The Boss    There is no such thing as taking up too much of our time, plain and simple!  Ask away.

We’re here for you,

Rich
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

salamander

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Re: Questions from The Boss - Stoneaxe's better half...
« Reply #17 on: May 16, 2009, 04:55:55 pm »
I'll just add my experience on caregiver time.  I live alone, and had to line up care at first.  My parents stayed with me for two weeks.  Then they were only a phone call away, which was necessary a couple times.  I just made sure that I always had a phone with me for probably two more weeks. 

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

catlover

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Re: Questions from The Boss - Stoneaxe's better half...
« Reply #18 on: May 16, 2009, 05:36:20 pm »
Hi Boss,
I've read all the answers to your questions and I think that they were very useful. I can't help you with any answers because I've been a W and W until now. I'm going in for surgery on 20th May so any questions and answers I can find on the forum is good for me too. I'm sending my best wishes for you and your husband and I hope everything goes smoothly. Take care both of you!  :)

Best wishes from Helene
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK