In a Quandary - paraesophageal

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YinYanger
Regular Member


Date Joined Nov 2013
Total Posts : 31
   Posted 12/12/2013 1:06 PM (GMT -6)   
Hello all,

I've been reading here for a while and have summoned up the courage to post.

I'm 60 and despite having a couple well-managed autoimmune conditions and a small chapter in the book of medical conundrums blush I thought I was in pretty good health.

I've been under a lot of stress for a protracted period (death of several family members, reduction in income, freak, and costly dental incident, and more). Gosh, care to meet me for coffee?!

Bottom line. Asymptomic until about eight or nine months ago after traumatic cough/cold and than began to experience a few episodes of dysphasia and regurg; body appearance changed with fullness in breastbone area; occasional pain in back (not chest). A few months ago I changed gastroenterologists (I have ulcerative colitis and it was time for a colonoscopy) and also decided to have the upper endoscopy since health insurance situation not stable (had day after barium after shocking diagnosis from GI.)

I was completely unprepared for the outcome.

Diagnosed type 3 hernia, with 50% of stomach in my chest. I had made some lifestyle changes last summer as incidental diagnosis of hiatal hernia came from a breast MRI that I get annually because I'm high-risk breast cancer. This eliminated some symptoms.

I've seen one surgeon who is considered one of the best in the country (here in Seattle). It was an abbreviated visit and I had little time to ask questions. I do have have a public health background and know how to read research. And I have been reading a lot on this topic.

In a past life I was a medical writer and I've done health care quality assurance. I know the limits of my knowledge, however. Some doctors are welcoming if I mention my background and others are not. This fellow was almost the stereotypical type - condescending and dismissive and I felt terrible after the appt. If I went the surgical route, he would not be available until spring.

I will likely not have my current good health insurance and will be on the Exchange and not have access to any of the three doctors I'm been referred to if I wait several months.

I have another appt. at the end of this month with a second surgeon. It takes a long time to get into these people. Already I'm hearing different views on manometry (both the approach and timing), ph test applicability in my case. One doctor requires I have the manometry and ph before he will see me. Another (who I will see on Dec. 30th) asks that I wait until the visit. He may even want the upper or barium done again! The first doc said absolutely no ph needed.

I'm overwhelmed. I'm told l'm not in an emergency situation but from my reading and first surgical consult, I think they will all recommend elective surgery. Some days I feel terrible - malaise; fullness in sternum, etc. hoarseness in voice; coughing in bed.

Other days I'm fine. No history of heartburn-type symptoms.

Here are some findings from barium test I've had.
- gastroesophageal junction located along posterior aspect of the hernia sac
- esophageal mucosa normal in appearance; no evidence of mass, stricture, or ulceration
- esophageal motility is mildly decrearsed w/evidence of intraesophageal reflux (I think means nonerosive)
- bolus of marshmallows passes readily into the stomach; 13mm barium tablet passes readily into distal -esophagus.
-contrast passes readily into proximal small bowel; no masses, etc.

Upper endoscopy:
-normal esophagus
-large HH w/paraesoph component
-hiatal narrowing 40 cm from incisor
-z-line 31 cm from incisors
-normal duodenum

Already, I've gone on forever. I do apologize. I hope someone has some words of wisdom to offer.

I really don't know if I should rush into this surgery now just because I have insurance. The first surgeon wants manometry with the wire placed endoscopically first - he gave me absolutely no information on what approach he would use.

Should I do watchful waiting and drop the extra 15 or 20 pounds I'm carrying in hopes of minimizing symptoms?

I'm in Seattle and I know these three surgeons all know one another and are considered the best. But this surgery is nothing to sneeze at. I'd be lying if I said I wasn't terrified.

Again, my apologies for the length.

I will be grateful for any feedback.

JJ.

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 12/12/2013 1:24 PM (GMT -6)   
Wow you have quite the hernia! I had surgery and I only had a small sliding one requiring only about 3 stitches to close up and I was miserable from it.

It sounds like surgery is in your future, but before you try to hurry it along losing weight will help you with your surgery and with recovery. You also really need to get the manometry done before talking about the surgery because the manometry will often help the surgeon decide what kind of wrap to use on you. (assuming that you will have both the nissen with hernia repair which is common)
is that what your doctors were talking about??

I was terrified to have the surgery back in August, I wasn't even 30 yet and it was a huge blow. I did have it and I would do it again and again if needed. It really improved my quality of life.
The recovery part is a bit challenging, you can read my journal on here, Denise (Dencha) has an awesome journal as does Bill and LJenner (Laurie) and many others. The support and help I found on here was incredible and I dont think that I could have gotten through my surgery and recovery without this community and all of the help I had.

The surgery itself is very expensive. If you can get it done before your insurance runs out that would be better financially of course, but you do need to make sure that you have all the necessary tests. The PH one is not so necessary because you already know you have such a large hernia, but the manometry and also gastric emptying study was extremely important to my surgeon to make sure I could swallow well and also to make sure I had no delay in stomach motility.

Best of luck to you and welcome to the forum!

YinYanger
Regular Member


Date Joined Nov 2013
Total Posts : 31
   Posted 12/12/2013 1:38 PM (GMT -6)   
Hi StephanieJean,

Thanks so very much for your reply. I feel so alone. I have been reading all the stories here closely. I did notice how young you are and glad to hear you are doing well.

Yes, when I go for something, I go big time! Since I've had relatively few symptoms and most of them in the last six months, I'm concerned that I might actually be worse after the surgery. Though presumably the symptoms will get worse over time if I don't do it.

I'm 5'6" and 155 pounds. I don't look overweight, but I carry most of it in the abdominal area. And I'm heavier than was just five years ago.

Anyway, thanks again for your kind response.

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 12/12/2013 2:00 PM (GMT -6)   
You are not overweight for your height, so I would not let that put you off from surgery. You may lose some after surgery, although not everyone does. I did not, but since surgery I have lost another 5 lbs because of diet and exercise, not because I had trouble eating.

I thought I was fairly asymptomatic, but I found that after surgery I felt a lot better, especially my lungs. Sometimes we get used to feeling a certain way and not even realize how much better we can feel.

YinYanger
Regular Member


Date Joined Nov 2013
Total Posts : 31
   Posted 12/12/2013 3:59 PM (GMT -6)   
I do realize I need the lovely manometry and that this helps with the surgical strategy. I was just concerned that I can't even see one of the doctor's before I've had the text. And one surgeon does a more complicated manometry with endoscopy first for guide wire placement.

Has anyone here gone with a surgeon they know is good technically but who has a difficult personality?

My inclination is to speak to the second person I've lined up and see if he's a little easier to deal with, open to questions, etc.

I think I'm still deer in the headlights and having a hard time making decisions.

Wondering if I will ever be my normal self again after this surgery....

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 12/12/2013 6:50 PM (GMT -6)   
Frankly, as a past patient with a para (definitely not a doctor), there's not any great reason for most of the tests, except for finding out how well you swallow and the length of the esophagus. Obviously the surgeons agree you need the surgery. As mine said, "These things don't get better by themselves."

I'm glad you've been doing your homework about the procedures. Since cost is an issue, I'd choose whomever can get the job done before insurance is an issue. I'm presuming you've already checked their success by asking suggestions from your other doctors. I'm less impressed with bedside manner than experience and success rate. This is often not an operation done by just one surgeon. Ask about the team. The top doctors are normally in the big university hospitals. Check all the details.

The other issue for doing this as soon as feasible and safe is that paras can roll if you're not careful or just turn wrong at night. If the thing twists, the blood supply can be cut off, and you need to get into emergency surgery immediately.

Best wishes.

YinYanger
Regular Member


Date Joined Nov 2013
Total Posts : 31
   Posted 12/12/2013 10:13 PM (GMT -6)   
Hi Alcie,

I so appreciate your comments. I've read several of your posts. I hope your are feeling well.

For some reason, the first surgeon does not seem to think I'm at high risk for the complications that can arise from these para types, but who knows? I'm with a new gastro and it's hard to get in to see him. I really haven't been able to get complication rates (which are voluntarily published) - just good referrals from the gastro. And all three surgeons I've been referred to are subspecialists in this area.

I'm sure you are correct that I should not consider bedside manner - I'm not going out for cocktails with these people! But I was upset that I had virtually no opportunity to ask my prepared questions and that this first surgeon is not available for many months.

I will ask about the team at my next consult - good point.

If I may ask, how long did it take for you to feel semi-normal post surgery? I live alone and while I have friends to help for a few days, I'm concerned about this and my ability to return to my half-time job in a semi-timely manner.

Thank again.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/13/2013 5:19 AM (GMT -6)   
YinYanger

I have to agree with Alcie. These things will not get better without surgery. The chances of a complication of not having this fixed vs the outcomes I have had with this surgery tells me to get it fxed now while you have the insurance.

I also pass on surgeons who don't have a good bedside manner. It makes a huge difference in your after care. All my surgeons have been great about answering any questions after wards and have even called me 6 months and a year out to see how things are going.


Take care,
Bill devil
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

YinYanger
Regular Member


Date Joined Nov 2013
Total Posts : 31
   Posted 12/13/2013 8:34 PM (GMT -6)   
Thank you Bill,

I appreciate your comment regarding the choice of surgeon. My instincts tell me that this unpleasant and dismissive attitude would persist and aftercare might be an issue, even though the facility itself is topnotch.

I've noticed that many people here have had longstanding problems with GERD and related issues.

I have not had any problems whatsoever until recently. So while I realize I need to do this, I fear that I'll have a new set of permanent symptoms or restrictions.

Is there anyone out there in a similar situation?

Thanks again to all.
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