Author Topic: Cancel Cruise in Sepember?  (Read 7008 times)

neetze1

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Cancel Cruise in Sepember?
« on: January 11, 2013, 10:27:19 pm »
Hello everyone.  Another problem on my mind--like I don't have enough to deal with right now......
A few weeks before I started having tinnitus, which lead to my diagnosis of an AN, I booked a dream 10day land/sea cruise to Alaska in September of 2013.  I am just in the very early stages of this process. Had a consultation with Dr Luxford from HEI and he said I need Translab because if the size of the AN.  I also have an appt with Dr. Andrews from Jefferson on Monday, I am still waiting for Univ of Pennsylvania to even return my call.

Do you think I have any chance of being well enough to take this trip in September considering I don't even have surgery scheduled yet?
I know this a minor problem but I have other people involved with this trip. With all I am reading about dizziness I am not sure I will be able to stand the motion of a ship.  I did buy trip insurance so I should be able to cancel.  Should I wait and hope, or just give it up?  ???
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan

Jim Scott

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Re: Cancel Cruise in Sepember?
« Reply #1 on: January 12, 2013, 12:16:52 pm »
Hi, Anita ~

Post-op balance issues can be problematic but of course, how much so varies from patient to patient and cannot be predicted with any real accuracy.  That being the case, and the fact that the trip is scheduled for 9 months from now, I would suggest that you 'wait and hope', assuming surgery will performed in the next few months, giving you enough time to cancel the trip with no financial penalty.  In fact, knowing your cruise awaits could end up being a strong motivation to recover your balance functions to the extent that you can take and enjoy the cruise in September.  Other AN patients have taken cruises following surgery and were fine.  I trust that you'll have a similar experience.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

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Re: Cancel Cruise in Sepember?
« Reply #2 on: January 12, 2013, 12:45:30 pm »
Anita, Being dizzy and being off balance is 2 different things also.    I've never been dizzy with any of my surgeries.   Off balance feel was more light headed weird feel that affected my walking mostly in the outside or at places with big open areas.     Walking in the dark and on certain types of shiny tile or wet areas.     I have never been on a cruise but did go across Lake Michigan once on a large ferry with no difficulty.      It is hard to say how you will be post op and also if your brian has done some compensating for it already too.      I would leave the trip on and wait till as long as possible before canceling if do end up wanting to.         Each person varies with this and is hard to find the right answer for ones self.
                                                         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

arizonajack

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Re: Cancel Cruise in Sepember?
« Reply #3 on: January 12, 2013, 06:46:16 pm »
You don't know what's going to happen till it happens.

Since you do have trip insurance, I'd suggest waiting.

Even if you have balance issues after surgery you'll have quite a few months to work on vestibular therapy.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Nannybee

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Re: Cancel Cruise in Sepember?
« Reply #4 on: January 12, 2013, 06:56:42 pm »
I'm dealing with a similar choice myself. I was diagnosed just before Christmas and just a week after we put our deposit on our dream trip to Italy in October 2013. We have purchased trip insurance and will wait until the very last minute to decide if we can go. Although I will likely have gamma knife on my AN, one of my meningiomas needs to be removed (opposite side from the AN) and the thought of brain surgery scares me to death but thinking about looking at the stunning Mediterranean Sea again is my motivation to move forward, get past this and move on! Personally, I would get the trip insurance and keep the vision of your dream vacation  :)
Good luck!
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

neetze1

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Re: Cancel Cruise in Sepember?
« Reply #5 on: January 13, 2013, 08:04:20 pm »
Thank you all for the replies.   I think I will wait a little longer and see how this pans out.  I agree that it will give me a goal to work towards.  I hope Nannybee gets to go to Italy too!  Thanks again! Anita
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan

ginsue

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Re: Cancel Cruise in Sepember?
« Reply #6 on: January 20, 2013, 10:17:05 pm »
Hi Anita,
 I'm a newbie here too only I had my surgery in 1991.  My tumor was the size of a tennis ball. I had tinnitus before surgery.  Afterwards I had deafness, facial paralysis in AN side and balance issues.  I was in the hospital for 5 days and then did an in-house physical therapy for 5 days as well.  Two weeks after surgery I was driving.  I really suggest therapy for balance. Heck I even wear heels and love dancing. I was taught so many things including never locking your joints so if you lose your balance you can easily recoup.  Now to the point that I was going to make is that I have gone on two cruises and I did better at sea than my non-NA friends.  With my learned skills on balance I was able to roll with the punches.  Actually one rough day at sea the ship was like a ghost town, I had no problem getting around because I was use to being dizzy. You have insurance so what until the time nears then see how you feel.  Well wishes to you in the upcoming days.  Stay strong!

Sue
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

kareno

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Re: Cancel Cruise in Sepember?
« Reply #7 on: January 21, 2013, 03:30:29 pm »
Hi Anita:

Although everyones recovery is different I just wanted to let you know that my husband flew to the Bahamas 3 weeks after his surgery and was fine with his balance.  It is your choice to make but I think it will give you something to look forward to. 

Karen
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

sarahinPA

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Re: Cancel Cruise in Sepember?
« Reply #8 on: January 23, 2013, 07:19:51 pm »
neetz

I had translab In july 2011 and went on a cruise in November. then on another me the following year and have yet another scheduled for this September.  I just had my doctor prescribe me the notation sickness stickers that go behind your ear. I did use it for 3 days this past trip because I wasn't feeling great and it worked great I think I may have been sick from a bit too much to drink!  regardless it made me feel better !  just talk to the doctors about your concerns  they may even postpone your surgery until after depending on your situation   good luck with it all  but don't cancel your trip!!

 also I did some light kayaking about 2 months after getting out of the hospital and my biggest problem was being tired I felt pretty great !!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

neetze1

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Re: Cancel Cruise in Sepember?
« Reply #9 on: January 24, 2013, 09:23:46 pm »
Thank you all for your advice! >ginsue, glad you did better than your shipmates!  Who knew there would be an upside to being dizzy!
Thanks for the tip about motion sickness stickers sarahinPA.  I hope I will be in good enough shape to go when the time comes.
I haven't had much time to think about it lately with all of the research I have been doing and Dr visits trying to figure out how best to handle this little problem in my head!  I hope to be planning shore excursions soon instead of treatment plans!
Thanks again!
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan

ginsue

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Re: Cancel Cruise in Sepember?
« Reply #10 on: January 24, 2013, 10:58:05 pm »
Anita always look for the upside no matter what live deals you. Remember that it could always be worse, so be thankful for what you have.  I wish you the best my friend. :)
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

sidecar Kathy

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Re: Cancel Cruise in Sepember?
« Reply #11 on: January 25, 2013, 03:21:51 pm »
Hi Anita,
I recently went on an Alaskan cruise this past September.  I can tell you that the seas really didn't get that rough.  Do you have a room inside or a balcony.  I highly suggest a balcony room as you will get the see whales and other stuff from the comfort of your own room.  I hope you get to go on it cause like you said it is a trip of a lifetime and we had the best time.  Best of luck!!
Kathy

neetze1

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Re: Cancel Cruise in Sepember?
« Reply #12 on: January 26, 2013, 06:00:38 pm »
Kathy-we have a balcony booked.  I really want to go!
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan

sidecar Kathy

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Re: Cancel Cruise in Sepember?
« Reply #13 on: January 27, 2013, 03:30:52 pm »
What are your ports and what cruise line???  We started out in Seattle headed to Juneau, Skagway, Kitchekan and B.C. 

neetze1

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Re: Cancel Cruise in Sepember?
« Reply #14 on: January 28, 2013, 08:21:48 pm »
Princess 10 day land/sea.  Fairbanks, Denali, Mt McKinley then cruise from Whittier to Hubbard Glacier, Glacier Bay National Park,
Skagway, Juneau, Ketchikan, Inside Passage and end in Vancouver.

I thought I was healthy when I booked this.  Now I am tired just reading it!
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan