Author Topic: I can't control the tumor but I can control what I pack for the hospital....  (Read 6055 times)

MAlegant

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This question may seem strange but I have very little experience with hospitalization (last time was when my son was born 20 years ago), so I was wondering what I should pack.  I went to Target today and bought cute pjs, slippers and a robe, all color coordinated of course.  Now I know I may be too ill to care about anything post-surgery but right now it's the little things that I can control that I'm focusing on.  Any advice????
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.

vicki1967

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If I would have thought about THAT part ahead of time  ;), I would have packed a favorite blanket, or something of the sort. You don't have that home-like feeling in a hospital, of course, so anything to remind you of home would be good. How about a few small pictures in frames? When you constantly see different faces (in a hospital environment) you really don't get the opportunity to make any new friends. Everytime I opened my eyes for the nurse/doctor/assistant observation of me, I didn't recognize a single person. They change shifts so frequently. So - any little gadget to remind you of home is what I would recommend!!

vicki1967

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OH, I thought of another thing - lots of gossip magazines!! You probably won't feel like reading much, but the pics in those mags can be quite entertaining!! heheheee!

LADavid

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Hi Marci

Pizza!  You should pack pizza for the hospital.  That's what I missed most.  Seriously, I remember seeing a thread a while back where people gave their suggestions.  That one that stood out the most was chapstick.  If I remember correctly, my lips were parched for days after surgery.  One thing to remember, they will want you up walking the halls as soon as you are able.  So you will need the PJs and the robe and slippers.  Don't worry about much else.  You'll be sleeping a lot.

BTW, I'll be posting a notice about your surgery in the Pre-Treatment section tomorrow.  That's where the well-wishes will be.  Will your husband be able to update us?

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

MAlegant

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Thanks David, chapstick, got it!  Got the robe, pj's and slippers as well.  Now if the Wizard of Oz will give me my courage I'll be all set!  :)
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.

MAlegant

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Oh, forgot...either Brian (my husband) or my friend Andrea, will be updating Debbi; she can post to the group from there.  Thanks for asking.
M
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.

Cheryl R

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Marci.    The dressing over the incision is big and cumbersome so make sure what you take to wear is either button type or has a large neck.    I was always cold after my surgeries (I am NF2 and have had 4 surgeries) so I so learned that and take warm apparel.     You will be wearing ted sox  while in the hospital.                  Lip balm is good to have.      Don't worry about makeup.   I did take face wipes to use for facial cleansing.                If you wear glasses,it will not fit over the dressing so having an old pair with the bow off is good.            You probably won't feel like reading but tv usually works.     Your taste will probably be off and some drinks may not taste good so ice water worked best for me esp since you may be on a fluid restriction at first.  
I found over time that if one has any type of dry eye (and you may have some even if no facial paralysis) that the heavier type works better.    My hospital always just gives tears type drops for daytime use.    The heavier one like Refresh Liquigel works better for me so I take them with me anymore.  They do use  the gel type for nighttime use.
        Good luck with your surgery.        The first couple weeks after are pretty tiring and then it does improve.                                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Syl

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Marci,

I didn't pack anything for the hospital. No chapstick, no slippers, no robe. When I was there I didn't care about needing anything. I couldn't even enjoy tv. I had my eyes closed most of the time because the dizziness and nausea were so bad, even when I had visitors. When I walked the aisles with the physical therapist, she held my robe for me to keep me decent. She even provided socks for me. They provide toothbrush and toothpaste. A comb or brush was the only thing I needed to tame my hair right before I was released to go home.

I'm praying for a good outcome with your surgery.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

MAlegant

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Great advice from everyone--including Syl, who wisely points out that it may be a non-issue.  Ok, I admit it, I just needed to buy something for myself on the off-chance that I *might* feel well enough to care.  If not, I will have new stuff for my recovery at home.  Getting something new somehow reassured me that there would be life after surgery.  Yes, I have control issues, and fashion issues, and shopping issues.... :)
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.

Debbi

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Hi Marci-

I'm jumping on a little late (lunching with ANers in NYC) but for what it's worth .. chapstick is a definite!  Slippers ... wet wipes ... toothbrush and toothpaste (my mouth tasted awful after the anesthesia) ... small bottle of mouthwash ...  really loose fitting pants (yoga pants are really good) for the ride home if you are getting the belly fat .. I'll see if I can find the post with other suggestions later, okay?

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Tamara

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Marci,
  Sorry I found this so late - welcome to our exclusive little group, and best wishes with your surgery.  I am 5 weeks post-translab and doing OK.  There is an old thread that I hope you can access that has lots of good suggestions.  The biggest for me were chocolate (dark M&M's), lemon drops, comfy PJs., hair scrunchies (for your remaining hair), and a vibrating massager.
  Also, know that apparently it is very common for women to get their period following surgery - they tell me it is due to the anesthesia.  THAT I could have done without.  So bring stuff for that, even if you're not due to have it.  Yuk.

http://anausa.org/forum/index.php?topic=34.0

Again, best wishes!
Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

MAlegant

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Thank you for the thread, so many things that make so much sense.  Wishing you continued good health.
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.

4cm in Pacific Northwest

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Take photos of you with the people you love - in your life just before you go.

Have these printed up and at your bedside...  to view during your recovery

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Syl

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Yes, I have control issues, and fashion issues, and shopping issues.... :)
Marci

Marci

Don't let me stop you from shopping. I went shopping before my surgery for comfortable clothes. But since I lost 10 lbs after surgery, I need to go shopping for clothes that fit. May I suggest you do shop before and after? Nothing wrong with that.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

leapyrtwins

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Marci -

here is a more recent thread than the one Tammy referenced in her post.  It has some of the same suggestions, plus a few different ones.  http://anausa.org/forum/index.php?topic=5830.0

I'm with Syl.  Post op I didn't feel like reading or watching TV.  Didn't wear my own pj's, slippers or robe - used what the hospital gave me.  Also used the toothbrush and toothpaste given to me by the hospital.  Pictures of my kids were essentials, as were sunglasses for the ride home.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways