To travel or not to travel, that is the question.

[DeuxofUs]

All,

I am struggling with a decision and it is keeping me awake at night. I have spoken with Dr Stelzer (one of the best in the country for the Ross Procedure) and he is in NYC. I REALLY liked him and he took time with me to answer all my questions. Plus, he has a good sense of humor. Kind of nice for a surgeon. BUT, I do live in San Diego and the travel would be intense. We are talking like 5 hours of plane ride. Ugh.

My other choice is Dr Starnes at USC Keck center but I haven't talked to him yet. Just his assistant. Sort of gives off that "rockstar" thing. However, I would only have to drive a couple of hours for surgery. He hasn't done quite as many Ross ops as Dr Stelzer but he has done quite a few. I know he too has a good reputation.

I'm really struggling with this and maybe you guys can provide some insight.:confused2:

Thanks in advance.

 

[Jkm7]

That's a really tough one and you know that only you can make that choice.

Dr. Stelzer's reputation is world renowned and we've read so many wonderful comments about his abilities on this board. In addition, you seem to personally like him. That is all a winning combination.

That is not to say he is the only totally competent, very able surgeon who does your precedure.

How much do you want to have him do the surgery?
THAT is the question IMO

All the choices we have to make when faced with OHS are not easy. But they are so important.
I'd suggest meeting with Dr. Starnes and not making any decision until after that appointment.

Best Wishes.

 

[tprice54]

I would definetly meet with Dr. Starnes before making a decision. Certainly Dr. Stelzer is the person everyone is compared to for Ross'.

 

[DeuxofUs]

Yes, you are right.. I should meet with Dr Starnes. He won't see me until I give him a CD of my echo and my cardio flat out won't give me that because she had it on "tape" along with everyone else's that day. She promised to give me one in August for my next check up.

So many decisions.... oye.

 

[Jkm7]

It is your right to have copies of all your tests. No doctor or hospital should be refusing your request for your own tests and records.

If she can give you one in August, she can give it to you now.

 

[DeuxofUs]

JKM,

She told me she didn't know "how" to separate mine from everyone else's and put in on a CD. She said if she had known I wanted a copy, she would have done it separately in the first place.

I'm giving her a chance... if I don't get what I want in August, then I am leaving her. I lack some confidence in her because she KNEW about my aortic stenosis a year ago but didn't tell me until Feb. I don't know why she did that... I wonder if she didn't want to scare me unnecessarily back then... I was 1.6 and now I am at 1.0cm...

 

[buncle]

The Ross procedure is more complicated and needs to be done by the very best , most experienced surgeon you can find in my opinion. Travel time would be would be much lower on the priority list for me.

 

[kfay]

It is your right to have copies of all your tests. No doctor or hospital should be refusing your request for your own tests and records.

If she can give you one in August, she can give it to you now.

I agree with this one. She may not know how, but I'm sure there is someone in her practice who can figure out how to copy just one echo off a tape of several.


Kim

 

[Allisoninoz]

Hi. I was lucky in that Peter Skillington is Australia's most experienced RP surgeon (more than 300 so he's also among the world's most experienced) and is in my home city of Melbourne. Hindsight is a wonderful thing, but having done my research, I do think I probably would have travelled from another state so he could do it (he has plenty of interstate and o/s patients, especially from Asia).
Do you have anybody you could stay with in NYC - or is there a nice rehab facility you could stay in for just a week or so post-surgery? If you're anything like me, you will feel exhausted after you're discharged from hospital so a few days somewhere would be ideal.
I'm nine weeks on now and feeling really good most of the time

 

[Just ASK]

You are facing the same thing I was. I live in Florida and ended up going to the Cleveland Clinic. Turns out that my surgery was full of complications...17 hours in the OR...and man, was I glad I was at the CC when this all went down. I had 2 separate 2 hour flights back home, but they were uneventful and much easier on me than I ever anticipated (10 days after surgery). If you like Stelzer, the flight is a minor point....go where you know you are in the best hands.

 

[DeuxofUs]

Allison,

I do have a couple of friends in the NYC metro area but I wouldn't do that to them. LOL. Plus they live in apartments the size of a shoebox. I will stay at a fancy hotel (why not splurge a little?). I have stayed in several hotels there and I know the city pretty well. I LOVE NYC so it's a good excuse to go to one of my favorite cities.

I might even book business class for the trip home:cool2: The extra room will help. For some reason I keep thinking.. what if something happens to me on the plane?? It's a paranoia thing I guess.. but so many people travel all the time so it can't be that big of a deal. Dr Stelzer said he has folks fly in from all over Europe.

 

[Herb_Webb]

Don't know the Ross Procedure. I do know that whatever happens will affect you for the rest of your life. If it were me, an extra 3 hours or 3 days for that matter of travel time to see the best, would be soooo miniscule compared to decades of life left to whoop it up.

JMO, best of luck.
Herb

 

[Jkm7]

Many people travel for OHS and with proper planning, you should be able to handle it fine.
The most important advise I've read here is to pre-arrange for wheel chair to be available to you curbside to gate. You will be amazed how exhausting the walk would be. Have a wheel chair arranged for you on arrival.

Plan that you will not be able to carry anything weighing more than ten pounds. Your bellman at the 'fancy hotel' can send a suitcase home for you at the end of your stay so you don't have to carry it to the airport. Bring only a bag weigh/contents under the ten pound limit. DO NOT think you can cheat just a bit as if you damage your newly healing sternum, you could suffer that the rest of your life. The results of a poorly healed sternum are unpleasant.

You actually could send a suitcase forward to your hotel prior to your arrival and unless you stay there pre-op, arrange they will hold your suitcase for you until you check in post op. If you are staying there pre-op, no problem..... arrange for it to be held.
These are piddly small things that are very manageable. What is important is you getting the best surgeon in order to get the best possible result.

Best wishes.

 

[Michelle D]

I traveled to the Cleveland Clinic in Ohio to have Dr. Gillinov do my operation, I live in Florida. I do not regret it one bit, I'd do it again. I was drugged up well enough after I was released to where I slept during the whole plane ride, we upgraded to 1st class which was nice but I would've been fine regardless. I was so tired and out of it that it didn't matter. It was definetly worth it. The hospital was so much better than any here, and even the staff were fantastic.

 

[Michelle D]

Oh yeah, have a well chair ready for you at the airport and it would be best if someone can fly with you to deal with luggage and stuff. I was also worried about what if something happens so I stayed an extra 4 days after being released in Cleveland.

 

[Jen]

Has anyone heard anything about Mark Stiegel at the Sanger Clinic in Charlotte NC.? He shows that he specializes in the Ross Procedure.

 

[drivetopless]

Meet the other surgeons and then go with what you gut is telling you. When I was picking surgeons, I had two great choices but went with the one who had the most experience with the type of valve I wanted. He did not have the best bedside manner necessarily. What you want is a good "mechanic" was how it was explained to me. Bedside manner is perhaps not as necessary in a surgeon.

And, while you are there, I would ask the surgeon for a recommendation for another cardiologist. I'm not so sure about yours based on some of your descriptions of her follow up/communication skills. So, it wouldn't hurt to maybe interview a couple of cardiologists as back up while you are at it.

This is your heart . . don't mess around with just okay medical care.

 

[Bryan B]

I had a Ross Procedure in 2004 at Duke by Dr. Jaggers who had a lot of experience doing Ross Procedures. If I was able to do it over again I would have gone to Dr. Stelzer. When I found out about my aortic root dilating I e-mailed Dr. Stelzer and he e-mailed me the next day and gave me his opinion and a lot of information about my condition and my options. Because of financial issues, by the time I had surgery saving my aortic autograft was not possible. But if I could have one surgeon in the world do my Ross Procedure (or try to repair it) it would be Dr. Stelzer. There are a lot of very good Ross Procedure surgeons...and then there is Dr. Stelzer. IMO you need to get your cardio off of her azz and get that CD to him and/or any other surgeons you are considering. Putting several people's echos on one "tape" is ridiculous. Why they aren't recording every person's echo to individual CD's is beyond me. Even if you don't use Dr. Stelzer as a surgeon I would trust his opinion without question and I would send him your echo once you get it. My impression from communicating with him is that he will be more than willing to look at it and give you his honest opinion free of charge.

 

[ruthienc1]

I think travel should be a non-issue......you will be well looked after! I flew from NC to Boston, much shorter distance for sure, but the airline really knew how to take care of me (including getting me up to the level of a small plane which had walk-up steps, via the elevator they use to load food!). I still remember their kindness three years later. Good luck to you. For me, it was worth it to travel to my particular surgeon.