Just discovered my AN and stuck in Singapore

[QRM]

Dear All,

Just found out 3 days ago that I have AN, like a previous poster said luck was on my side. (have to be positive)  after the initial bomb shell discovering I have a brain tumor, it was a relief to find its the "Good" one to have.

Now that its all sunk in, I have been keeping myself busy getting facts to make a decision on the next step, interesting the local surgeon in Singapore feels my 2.5cm lump is perfect for the gamma knife as I previously lost my hearing to a viral infection ten years ago and still have no real symptoms, it was discovered during a routine medical screening. 

The best advice so far is find somewhere that does this everyday,  because Singapore is so small AN does not crop up very often, which means I am looking to the states for surgery, my first port of call would be the House Ear institute.

I am waiting of  my full report so I can send it to them but my question is has anyone carried out the surgery and got back on the plane after a week or two ( assuming all goes well) and if anyone knows the area are there any decent accommodation for my family to stay near by during the procedure and recover period?
 
And most important thanks everyone for being here its been an emotional roller coaster, and having people to just talk about it is therapy in itself.


regards

Rick

[Jim Scott]

Hi, Rick:

Sorry to learn of your AN diagnosis but pleased that you found your way here, via the internet.  Unfortunately, I didn't have my surgery at HEI and so, cannot offer the kind of information you're seeking.  However, many other posters have had their surgery (some very recently) at House and I'm sure they'll offer their advice and the kind of information you need.  I wish you well in your quest for HEI info and hope the forums will continue to be a resource for you.

Jim

[JerseyGirl2]

Hi, Rick,

I had the translab procedure for my AN at House this past January, and fatigue was my only post-surgery issue. I flew back home from L.A. to New Jersey 10 days after my surgery and experienced no problems whatsoever on the flight. I think the "fly after 10 days" is pretty much standard at House, although I think one patient flew back home a day or two earlier while I was there. Rest assured that they will not release you until you are ready to fly! Seton Hall, a dormitory-like facility, is located adjacent to St. Vincent Medical Center (where House surgeons operate) and the House Ear Clinic -- it's not luxurious by any means, but is more than adequate and is a great place for patients and family members both pre- and post-surgery. There's a link to the Seton Hall website on the St. Vincent's website, if I recall correctly. And you're certainly planning to do the right thing by sending your MRI to House for their free phone consultation.

I have absolutely nothing but good things to say about my House experience -- I would go back there in a heartbeat -- but you'll certainly find other excellent surgeons and medical centers mentioned on this forum as well. It sounds from your message that you might be exploring GK as well as surgery, so you might want to look for some GK-specialty places as well.

Best wishes as you continue your research and plans for your treatment!

Catherine (JerseyGirl2)

[Will]

Donnalynn,

I am so glad to hear others are as please with their surgical team as you and I are. When they get as specialized as this they pretty much better be the best in the business, which I'm finding they are. The key to a good outcome is a good surgeon with a globally good approach.

Good luck Rick, you will do well.

Will

[leapyrtwins]

Rick -

2.5 cm is moving towards a little too big for radiation, so IMO you'd be wise to check into surgical options.

HEI is well-known and has a very good reputation.

Good luck,

Jan

[QRM]

Thanks for all the reply, 

Feeling more up beat,  now I know what they mean by good days and bad days.  I am still weighing up my options and of course will wait for the input from a few more Doc. 

Funds permitting,  selecting where to go is like choosing between a Lexus, BMW, Merc, or Range Rover, all top of the range all very capable,  its just a personal preference, as they all do a good job of getting you to where you want to go.

One thing that I keep noticing while there are lots of encouraging stories, I often see notes like after 20 years I still have issues, or I have complications, I know every one is different and the usual suspect list of complication is well documented but can someone shed a bit of light on these issues in an everyday kind of way.

The big irony I went for my medical screening expecting all sorts of horror stories about my heart, my idea of exercise is getting up.  All came back totally clear, never occurred to me the problem is in my head.  Might be an idea to use these next few month to get into shape ready for surgery?

Talk about psychosomatic suddenly I can feel this throbbing and pain in my right ear. 

Will be nice to get a buddy system going latter, try and meet up or at least chat with someone in the same boat going for the same thing at the same place roughly the same time.



Thanks,  you guys are real stars


Rick

[chocolatetruffle]

hello rick
welcome to the forum and i am glad you found us!!!  i am originally from singapore and i will be hitting my 1-year surgery anniversary in 2 weeks.  I had my surgery at House and they are really professional and awesome.  You can do a find on all House threads in this forum, and you will find nothing but rave reviews.    The hospital also provide guest rooms (seton hall) for families and for your post surgery stay.  House patients come from all over, and they usually fly back after 2 weeks of surgery (or once they are "cleared").

it is definitely a roller coaster ride but it all depends on how you take control of your emotions and thought process.  anyway, i will be back to singapore in dec, and if you have any questions, i will be happy to talk to you.


good luck!!!

[QRM]

CT

Got your message but don't know if mine went out correctly there's no sent box? If it didn't get through, I would love to have a chat and fondle

Keep me posted on your travel plans

regards



Rick.

[Cheryl R]

Rick,    People who had treatment many years ago had a much harder time with ANs.     MRIs were not even available.       Drs were not as aware of how to do treatment and ANs were probably all of a large size.             We are very lucky now that a big share of us do fairly well.     Many of the ones with complications now may be due to sometimes seeing a surgeon who is not as experienced.
Large tumors can be harder on people as some do not even have symptoms they know for sure are ANs.         Many drs still do not believe ANs are as frequent as they seem to be and do not order MRIs when they should be.                 Tumor location is a factor also.
   I have had now 4 surgeries for 3 ANs due to having NF2.         I have been very fortunate and my after effects are not real evident just to look at me.       I now know many who had surgery and have got to know personally and none have what I would call complications.        Many do have some after effect.  Most are minor long term.     We may be deaf on the one side,        There can be some long term balance issues and this can just be having some off balance in the dark or on real uneven ground  or having to watch on stairs.           Many do get back to their active way of live they had before with sports and running.                Facial paralysis can be a problem for many but most have theirs return.     If the facial nerve is severed then nerve graft is a possibility.       I am one who had that myself and was done at the same time the tumor was removed from the facial nerve.     I am ok to look at but do not have a perfect smile.   
The idea of surgery is scary and at first you don't think you will ever improve but one does.    We are lucky to be in this age of medical care.
       I hope this is of help to you and feel free if you have any questions that many of us are glad to answer.                                      Cheryl R

[Debbi]

Hi RIck-
I didn't have surgeyr at HEI (NYU for me) but have heard nothing but excellent reviews from the many folks here who went there. You will be in excellent hands!

As you'll hear over and over again, everyone's AN story is different.  Some people have virtually no complications while others seem to get the "lion's share" of complications.  I don't think there is any accurate way to predict this.  My best advice to anyone is to educate yourself on what "could" happen, but don't go crazy focusing on all the possible negative outcomes.  By putting yourself in the hands (literally) of competent, experienced practicioners, you are already stacking the deck in your favor.

OH, and by the way, welcome to our fun little group!

Debbi

[OTO]

QRM
If you decide to go for treatment with the House Clinic, they typically use St Vincent's Hospital which is across the street from the clinic.    However, in one or two posting, some people said that at least one of the House doctors is now doing AN surgery at Cedar Sinai hospital.  St. Vincent's has a guest house called Seton Hall or Seton Center.  The rooms have a double bed and the couch folds out to a single.   You have a private bathroom with shower.    They change the linens and clean the rooms once a week, but you can get clean towels daily.   It is very reasonable, I think it's $50 per day?    The building is secured, you need a key to get into the building, and into the elevator.   There is no staff on duty after hours, but hospital security will respond in an emergency.   I think there is two floors of rooms.  Each floor has a shared kitchen (big refridgerator, microwave, coffee maker/hot water, toaster oven and sink) and a day room with TV and tables.... very simple... no cable TV, etc.   There was a PC in day room, but it was dial up, and access was horrendously slow.   When I stayed there in May 2007, my Dad and I would walk to the hospital cafeteria to eat.    Not bad but after a week it gets boring.    There's not too much within walking distance of the hospital... maybe a Burger King and a few local fastfood places...  a supermarket (maybe 20 minute walk).   St. Vincent's is in mid-town Los Angeles, so mostly its a hispanic neighborhood.   You might want to rent a car, if your family is the type to go stir crazy.    Obiviously I couldn't drive, and my Dad didn't want to drive, so we just stayed within walking distance of the hospital.   House Clinic will provide a list of nearby hotels that offer a "House Clinic" discount.  Some on the list were high class hotels...  For planning purposes, 4 or 5 days in hospital and another 5 days recovery before the followup, before you can fly out.    Example:  Flew in to LA on sunday 5/20.  All day testing 7:30 am to 6:00 pm on monday 5/21.  Surgery on tuesday 5/22.   Released from hospital on saturday 5/26.  Follow up on friday 6/1.   Flew home on saturday 6/2.

[fbarbera]

Rick, I had a 2.5 cm AN, diagnosed last summer.  I spoke to doctors that recommended both surgery and radiation as a treatment.  It was a tough choice.  If you are interested in my experience, please check out my website below.  Best regards, Francesco

[wendysig]

Hi Rick and welcome!
As we all know, the AN diagnosis is initially a onfusing and frighening one.  Everyone will tell you, and it is the absolute truth, that everyone's experience is different, no to outcomes are exactly the same, whether you have surgery or radiosurgery.  For surgery, the outcome depends on size, location and how sticky the tumor is.  As Debbi said some of us come through this practically unschathed, as I did only being SSD but with no other problems, some are even more fortunate and keep their hearing and others have major complications such as facial paralysis.  The doctors can take an educated guess as to what someone's surgical outcome might be based on their experience, but none can say for certain. 

My advice is research, reserch, research and ask  as many questions as you can, both of us and the doctors you see.  Most of us are not doctors, although there are at least two who are active on the forum, Sam Rish and Dufreyene.  Both of these gentlemen have also been treated for ANs and can give you medical as well as first hand advice.  All of us will be happy to support you in whatever way we can.

With regard to HEI, as many before me have said, several people here have been treated at HEI and have been extremely happy with their outtomes and the doctors there, so it is obviously a wonderful choice.

Wishing you luck and not too much anxiety,
Wendy

[QRM]

Once again Thanks everyone,

Dr. Brackman of the HEI has a great reputation but I am surprised by how old he is 70?  not that I am an ageist or anything, is it  age or experience thats important? Ideally some where in the middle. Put it this way my DAD is 73 and the number of dents in his car is anything to go, I am a bit worried.

Bit off topic why is everyone using cm and mm I thought US was all feet and inches? I suppose what is .5 ft  is it 6 inches or 5 inches

[wendysig]

ANs are measured in centimeters by doctors and it is easier to use and understand their measurements which are exact, than to try to translate the measurements into inches and fractions.

Wendy