Need advice! Husband with AN taking a cruise any recommendations?

[jcm]

Hello everyone,

Husband was diagnosed a couple of weeks ago with AN.  We planned a family trip this
February on a 9 day cruise out of NJ to Eastern Carribean.  At this point in time,
he has slight balance issues and we are concerned if they could be worse on the cruise.
He has also suffered 88% hearing loss in left ear.  I am sure this will be a challenge however,
is determined to go on this trip. 

Has anyone traveled on a cruise once they have received their AN diagnosis and have not
had any treatments? 

If anyone has suggestions or recommendations, please share them with us.

Thanks,
V

[ppearl214]

Hi V,

there was a whole thread on it here, in the "Balance" forum... see this link:

http://anausa.org/forum/index.php?topic=3563.0

Hoping it helps the cruise... er... cause! BTW, I'm jealous!

Phyl

[jcm]

Hi Phyl,

Thanks for your quick reply and the link.  Already checked it out.  Learned a little info.  Hoping I will get more
responses.  I am going to check into the Ginger pills and ear plugs for hubby.

Also, I saw you went the Cyber knife route to treat your AN.  Can I ask why you chose this option instead of
surgery?  My husband is pro CK and we need to find more info about it.  It does not seem to be anywhere
in NY however, Boston is not too far. 

He has lost 88% of his hearing and has some balance issues.  I am concerned with his waiting. 
He is 46 and the AN is 1cm. 

Would love to hear your experience.

Thanks for sharing,
V

[ppearl214]

Hi V (you and John share the same profile log on? )

glad the link helped a bit... it was the most recent info I could find for you and gives good updates on those that had AN treatment and not and how they handled things. My cruises were all pre-AN diagnosis so I can't answer well, but I have balance issues primarily due to another diagnosis I have....so, I do hope others can further answer/help beyond what that thread provided.

As for me, I know I did a post for John in one or 2 threads here. I am now 22 mos post-CK for my 1cm AN.  I shared with him that Beth Israel Boston is the only CK center in New England although Brigham/Womans in Boston has a purchase req for one (my brain surgeon over there confirmed to me the purchase req as they currently only offer Novalis FSR for AN radiation therapy).  For me and my situation, it was a "no brainer" (hit me for that later).  based on my issues and backround and such, my decision was based on usable hearing at the time of treatment (over 90%) and hearing retension.  It was based on "do I go invasive or not?".  It was based on data showing efficacy on AN's.  It was based on others here and on the CK Patient support board that shared info....as well as what the drs there shared on all forms of radiation treatments for AN's.   I had my CK at the same age as John (ok, all, stop calculating my age, dang it!) and for the same size AN.

For me, so far, so good!  I have my next follow up in 2 wks (MRI this week with hearing test upcoming just before appts).  For me, side affects immediately post treatment did occur, things I kinda anticipated, but have now gone.  As you know, individual results may vary.... but I have to say that I have been one of the good outcomes

I am available via telephone (I'm on the ANA WTT -- Willing to Talk--  List) as well as email/PM. More than happy to share my CK experience if you'd like...

BTW, pics of the "Muster drill" on the ship would be great!

Phyl

[GM]

I don't have any balance issues...but I went to the Bahamas with my AN.... 

Gary

[OMG16]

Hi V my son went on a cruise right at the tail end of Hurricane Katrina so it was a very rough ride and he did really well.  I was worried the whole time as he left before it hit land and they were supposed to cruise right through it.  Thank goodness they changed the course a little.

My son was put on trans derm scope patches for headaches, dizziness, motion intolerance and it helped with his balance also.  I was told that it helped quiet his vestdibular (spelling?) system.  I'm not sure if this will help you but you may want to have him talk to his Dr about it.  We were all pleasantly surprised at how much it helped.  Have a great trip.  16

[jcm]

Hi 16 for the reply.  I will have John mention this to his Dr.  Can't hurt to ask.  Been doing alot of that lately.

So far from the replies, going to try ginger tablets, have him scheduled to get ear plugs, valium, and will look
into the trans derm scope patch.  We will have him armed and ready to go on the high seas.

Thanks everyone for their advice.  Keep it coming!

Good Luck 16!
V

[lori67]

My only piece of advice is to take me with you....I'm not sure that would help your husband at all, but it would sure be nice for me!     I'll even carry your suitcases as long as you promise to pack lightly!

Lori

[jcm]

Hi Lori,

We would love to take you!!  Can't promise we would pack lightly.  Going for 9 days.

Thanks to all our friends here for responding to our posts.

Good luck to everyone.  We are still researching Doctors for my husbands AN. 
We sent some copies of reports and MRI to Dr. Brackmann and Dr. Chang in California.

Wish us luck.

V

[OMG16]

V good luck to you and your husband while researching treatment options.  Keep us posted and if you can post the cruise pictures, I know I would love to see them!

Lori if you need help carrying the suitcases I would be glad to help LOL. 

[sgerrard]

We sent some copies of reports and MRI to Dr. Brackmann and Dr. Chang in California.

Perfect. I can't think of a better pair of doctors to get opinions from. Soon you will know what's what.

Bon Voyage!

Steve