travel for surgery

[madison]

hi everyone
i noticed that many of you have travelled to have your surgeries. i was interested in hearing about what is involved with that. it seems like it would be difficult to do. what i mean is, having a spouse with you (do they book a hotel, or is there a place to stay at certain hospitals such as HOUSE?)what is the average length of stay and are there follow-ups you have to travel again for? if i need surgery in the future, i want to choose a place i feel completely confident in, but i am worried that place may be far away. i was curious to know how many of you came to your decision and how hard it was to go through the process. thanks for the info. in advance.

[epc1970]

Hi Madison
I traveled from Maine to Oregon for my surgery. My choice was a non brainer  for me: my brother worked at the hospital that my surgeon was at so I knew I would have enhanced post op care and my surgeon had extensive AN expirence and a great record of saving the facial nerve. I had an advantage that I could recover at my brother house after my release from the hospital so I did not have to deal with hotel resrevations but my surgeons team made everything else really easy to handle from 3,000 miles away. My surgeon told me to page him whenever I needed anything. I had pre op testing etc on a Friday and surgery that following Monday.  I saw my surgeon at 2 weeks post op and was cleared to fly home, which I did two days later. Once home (I really don't remember the filght home) I kept in touch with my surgeon thru email if I had any concerns-they can even perscribe any meds you need.  I have had a couple of clinical follow ups with a team at Mass Gen but all of my follow up scans are still sent to my surgeon in Oregon . My Pirmary Care Dr here in Maine orders my follow up MRI's. I wouldn't have done this any other way because I placed a high priority on saving my facial nerve and was prepared to go to the best no matter what! It is a little more to co-ordinate but I have found everyone very willing to go the extra mile to help me out when they understand the situation. Good Luck in you r decision making process!

[Lilan]

It's not hard.

Personally I chose to travel to House because I had an obscure tumor and my facial nerve was at risk, and I just wanted the *most-most* experience I could get. My insurance covered them so it wasn't a tough decision.

House has Seton, a guest center on the hospital grounds, which couldn't be more convenient. It's $65 a night, much less than a hotel and convenient for you and your spouse or whomever. Travel adds some cost, of course, and it adds an element to the planning (booking flights, packing). But you won't be taking a a big vacation that year, anyway 

It was amazing to me how easy it was. Personally, I found it easier to be away from home immediately post-op. You are hardly in the mood to "see and be seen" and be responsible for anything anyway! They take your stitches out and evaluate you before "releasing you" to fly home, and beyond that the followup is just an MRI whenever they want it (six months or a year later) -- in theory you should not need followup with the surgeons (I have not) though you can call them anytime and of course they'd walk you through anything you needed. If you had ongoing issues, yes, you'd want to find someone closer to home at that point.

At House, they do all your pre-op starting early the day before the surgery, then you stay 10 days after. So it's 12 days minimum. I swear I just did this in June and the travel/being away part is already almost a distant memory.

Best of luck with your decision.

[cindyj]

Hi, I agree with Lilan in that it was almost easier being far from family and friends.  For me, it was nice to simply rest and recuperate without having to perk up for visitors.  Once the travel arrangements were made, the actual trip out and back were no problem.

Best of luck to you,

Cindy

[CHD63]

Madison .....

I, also, traveled to Duke University in North Carolina for my surgery (5 1/2 hours drive from my home) because every doctor I consulted locally said the neurosurgeon there was the best in the world for AN removal.  As luck would have it, my insurance considered it "in network" so it was a relief financially.  A bonus was the fact my sister lives just 20 minutes from Duke so it was a big plus to be able to stay with her pre-op and for a few days post-op before driving home (actually my husband drove!).

I think the reason so many of us have traveled for treatment is because it is so important to have the absolutely most experienced/qualified person we can find in charge of our treatment ..... whether it is radiation or surgery.  Obviously there are many very qualified medical people throughout this country ..... much depends upon the opinions of those we trust and the type of treatment we select.

Clarice

[Desilu]

Hi Madison,

I also went to House like Lilan and it was not a problem. There is one suggestion that I would like to make. Designate someone in your family to call once a day and get a report of your progress. Have this same person email all of your friends and relatives once a day with the good news. (please give this person all your contact address' before you leave). That way everyone is informed and you don't have to play Chinese telephone. It worked out very well for me and it minimizes the phone calls especially if you don't feel like talking. Ann

[QRM]

We traveled halfway around the world, with AN surgery its seem like the surgeons experience is one of the most critical factors in coming out OK, as we are not talking about removing a wart, traveling problems is low on the list of priorities.

There are a number of benefits:

Sorting all the travel/accommodation plans keeps you busy and your mind off the impending surgery.

Family traveling with you are kept entertained by exploring a new place.

My daughter loved the whole trip and keep begging to go back!!

As you will be staying in a serviced apartment or hotel, no need to worry about housework etc. all the groceries gets delivered to your door.

There is the issue if any complications occur and you have to stay for a while then accommodation cost suddenly goes up, but if plan for a month stay you should cover most eventualities.

Best of luck

[Samjones]

Dr. Shahinian at the Skull Base Institute performed my surgery, but prior to my surgery I was given past patient phone numbers to contact whom had there surgeries with Dr. Shahinian and most of them were from all over the world.. It amazed me how people traveled all around the world just to come to CA and have Dr. Shahinian perform their surgery.   So people would really travel as far as it takes as long as its to the best that would be able to save their lives...

[leapyrtwins]

Madison -

do not travel for surgery; most of the time it is totally unnecessary.  There is a stellar group right in your own backyard.  Drs. Roland and Golfinos.

Best,

Jan

[jerseygirl]

Madison,

I am glad I traveled for surgery, it all worked out. I did have a consultation with Drs. Roland and Golfinos and, while I have the utmost respect for them, they did not offer a solution for my complicated case and were actually wrong on a few counts, as it turned out. Just my 2 cents worth...

I see you already had Gamma Knife. What makes you think that you need surgery? Maybe, you should not worry?

                        Eve

[leapyrtwins]

Sorry, I should have put a disclaimer on my post that it was just my opinion - and opinions are what the Forum is made of.

I just don't like anyone to think that if they choose to stay close to home for treatment that it's a bad thing.  Lots of us can't or don't want to travel for treatment for many reasons - lack of insurance coverage, no inclination to, family commitments, work responsibilities, financial considerations, etc.   I am one of these patients - and I'm also an excellent example that sticking close to home didn't "compromise" my outcome.

I couldn't have asked for a better outcome - or a better team of doctors.

Like treatment decision, whether or not to travel, is an individual choice.  To each his/her own.

Jan

[Jim Scott]

Madison ~

I'll just chime in here to concur with Jan that choosing a doctor/surgeon close to home is not necessarily a compromise.  Upon my AN diagnosis, I was considering making the financial and personal sacrifice to go across the country to HEI because of it's overall sterling reputation and the many hosannas HEI and it's doctors received on these forums.  

The first local neurosurgeon I saw seemed a bit put off by the size of my AN and was evasive when I pressed him as to how many of these surgeries he had performed.  He finally, reluctantly admitted he had done 'approximately' sixty.  Not good enough - and his attitude made this doctor a non-starter for me.  This is when HEI stated looking like my best bet.  Then, my wife called her neurosurgeon's office (she had spinal surgery the year before) and - because her neurosurgeon didn't 'do' ANs - she asked for a referral to a neurosurgeon that was familiar with acoustic neuroma surgery.  In a serendipitous turn of events, the receptionist told my wife that the practice had a neurosurgeon with decades of experience performing AN surgery and was highly respected in his field.  As a courtesy, we were able to obtain an immediate appointment with this surgeon.  He was not intimidated by my large AN but looked at as a challenge.  He was very respectful of my concerns regarding facial paralysis as a result of the surgery and presented us with a plan to debulk the AN, then radiate it to destroy it's DNA and effectively 'kill' it.  The surgery went splendidly, as did the radiation (FSR) and my recovery was excellent with basically no complications.   Like Jan, I have absolutely no regrets about using a 'local' neurosurgeon.  

However, every AN patient is slightly different and in some cases, it may be near impossible to find a highly experienced neurosurgeon within a reasonable distance that routinely performs AN removal surgery and has a record of successful outcomes.  Had that been the situation when I was considering surgery, I was quite ready to spend whatever it took (even if I had to go into debt) to use the best facility and surgeons I could find to help ensure a good surgical outcome.  This is every AN patients goal, with good reason, and if that means travel, inconvenience and debt, so be it.  This is not a surgery you can take for granted or entrust to the first available neurosurgeon who comes along.  

So, there is no hard and fast 'rule' on this issue.  We do our research and make our individual decisions as we see fit.  Some will opt to stay local for their own reasons, some will feel it's a better choice to go 'out of town' for surgery (or radiation, in some cases).  Naturally, traveling for treatment can be complicated (and expensive) but AN surgery is too important to let those considerations decide for us.  If one can locate a very competent, AN-experienced neurosurgeon locally, all the better.  Again, there is no 'right' or 'wrong' choice.  It's a subjective decision.

Jim

[another NY postie]

Madison,
I just wanted to chime in also because I am headed to House next week.  Living near NYC, I had NO intention of going out there.  I saw many of the top doctors in the city that people have used and would have gone with Post (most likely) or Roland, except after extension research, due to the location of my AN (which happens to be right up against cochlea, as far as you can get back in the IAC) I felt,for me, that Middle Fosa was the best.  That is when it gets tricky in NYC.  The top guys have great experience with translab and retro, but Roland only does around 10 middle's a year and Post doesn't do any.  Hence my trip out West.  If you are having retro or trans, I think you can find several really great doctors in the city who have many years of experience - Post, Selesnick, Roland, Sisti, Sen - each from a different NYC hospital.  Depending on your case, you will probably find one of these guys who fits your requirements.  Just make sure you ask how many they have done of your type if you have unique circumstances.  If you're not happy with numbers or you haven't found a good fit, then you might consider widening your circle.  I would exhaust local options before traveling because I agree that there are superb doctors right here.  ALso, I did not check John Hopkins, which is closer, and they have an excellent reputation.  I was also lucky that my insurance works with House, otherwise I probably wouldn't be doing it. 
Good luck!
Cheryl