paraesophageal hernia surgery out of state

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cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 8/17/2012 3:17 PM (GMT -6)   
For anyone who used a surgeon out of state, can you tell me about your recovery. Did you drive or fly back home? How was that? How did you handle follow-up appointments or emergencies, if you had any?

The local, very well known and accomplished thoracic surgeon I met with here, will only do this type of surgery as an open thoracotomy. I have also been in touch with surgeons in both Chicago and Washington State and they both said, based on the medical information I gave them, that they would do it laparoscopically. I'm just trying to decide which way to go. I would absolutely prefer a lap procedure, as I have kids at home that I need to take care of. Yet, having the surgery close to home is a plus. Any thoughts????

Deb

MultiFundo
Regular Member


Date Joined May 2012
Total Posts : 46
   Posted 8/17/2012 4:52 PM (GMT -6)   
I did it twice. Both surgeries were in Maryland, and the first time I was living in California. Now I am living in Georgia.

If you have the lap procedure, you should be prepared to stay locally (preferably with somebody to drive you around) for 2 weeks. Both times, I was cleared to return home after those initial 2 weeks.

You'll be able to continue follow-up through a local gastro, and e-mail/phone the surgeon after about 4 months. I had (and have again) directions to return to the surgeon at approximately 1-year post-surgery.

Returning to California, I used air travel. I used a wheelchair in the airport, and brought Ensure with me for nutrition during the trip. At that 2-week mark, you should be off narcotics and cleared to drive yourself.

Returning to Georgia, my parents and I drove, splitting the trip to 2 days just because sitting so long in the car was uncomfortable. If I have to do it again, I would choose to fly.

Having had 3 Nissens now, I would highly recommend against the open procedure for a first time hernia repair. From your other posts, it sounds like yours is a type IV, which is much more likely to recur than other types. Once you go open, you'd be hard-pressed to find a surgeon who would then do a lap procedure. If you start with a lap, you'll find a small group who will try another lap -- and have the option to go open.

Good luck!
David

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 8/18/2012 2:32 PM (GMT -6)   
I agree with David. No way thoracotomy. Lap is available if you go to any of the big centers. I had my GPEH brought down and partial Nissen (Toupet) done at UPMC Presbyterian, Pittsburgh. The group there has done thousands and success rate is in the high 90% range.

I responded to your previous message with more info a few pages ago.

I had a roommate who had a thoracotomy for a different problem and she was in horrible pain and couldn't get out of bed at all way longer than me. I am a senior and had been in a bad wreck, was not in good shape and have post-polio syndrome and fibromyalgia, and more. She was younger and had no other problems I knew of. I knew mine might have needed to go thoracotomy or open, but it wasn't necessary because my surgeons are very good.

cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 8/18/2012 2:48 PM (GMT -6)   
Thank you Alice and David. The surgeon that said he would only do an open thoracotomy IS from a large medical center at the University of Michigan. He is very well known, as I have researched my condition. He has done just under 2000 of these surgeries and won't consider doing a lap procedure. When I asked about it, he had a visible reaction, and said absolutely not. His nurse told me that people come from all over the world to have him do this surgery. I probably won't find anyone else in Michigan that is more experienced with this type of paraesophageal hernia.

Yet, I just don't want to be cut open. I would so much rather have a it done laprascopically. But I would probably need to go out of state to find a surgeon that has as much experience. And this surgeon told me there would be less chance of a reoccurance if I had it done open. He said a lap procedure usually gives a higher reoccurance rate.

It's so hard to know what is right. I appreciate any and all insights and experiences and advice.

Deb

cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 8/18/2012 3:58 PM (GMT -6)   
Alice, did Dr James Luketich, at UPMC Presbyterian, do your surgery?
I've heard wonderful things about him.

Deb

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 8/20/2012 2:27 PM (GMT -6)   
Cuicui -

Yes, he was the surgeon of record. Of course there is at least one assistant, probably more, also someone who sets up everything, starts the surgery. The big doc comes in to do the tricky parts.

In my case there was quite a lot of dissection needed in the mediastinum to bring down enough esophagus to be able to do the wrap.

"Dr. Luke" has a fantastic reputation, but I would trust a few of his minions to do the whole thing too, particularly Dr. Levy. They both explained a whole lot to me and though they are horribly overworked when they go to their "clinic" in the hospital, I felt they spent enough time talking to me. I am not uneducated, degree in biology, worked in ICU at that hospital, worked in pharmacology research. I pretty much knew what I needed, but they detailed exact type of operation and how they were going to do it - lap, with possibility of having to go open or at worst thoracotomy.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/21/2012 5:05 PM (GMT -6)   
cuicui-

I can say from my experience with a thoracotomy, that would be my last choice. I've had 3 nissens, 2 lap and 1 open. These were a cake walk compared to my thoracotomy to repair a esophageal tear. I am still dealing with floating ribs and rib pain 18 months after it.
Sounds weird, but my open nissen was my easiest recovery of the 3, but my perception may have been skewed as it was just 6 months after my thoracotomy.

Myself, I would look for it to be done lap first.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11
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