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Posted 3/10/2015 2:36 AM (GMT 0)
And it IS a journey, I'm learning!
I'm a new member, having signed on in late January 2015 and posting about a dozen times so far. It was suggested that I start a thread to record my experience and questions as they come up, so I am.
I first posted on 1/22, right after my GI told me he was referring me for surgery to correct a very large HH. Since that time, I've read this blog almost daily and have learned so much that has helped me understand the condition, the treatments and things I would never have imagined! Thank you to the moderators and contributors. You are an enormous help.
I've known for several years that I have a large HH. I've taken PPI'S for at least 10+ years with a recent increase in dosage. I have been blessed to have few GERD symptoms except that if I miss a day or two of my meds my chest starts to ache so that I think I'm having a heart attack.(Recent stress test shows my heart is strong although I have some CAD). I do have anemia that has defied detection until now.

So, since that first posting I've had some basic diagnostics:
A sonogram that showed my organs appear of appropriate size and shape with no apparent problems, including gallbladder, cancer etc. what a relief!
Then my GI did an EGD. Again, I was relieved to learn I have no Barrett's, strictures, my esophagus appears smooth. A biopsy of a small area showed only a benign lesion probably caused by the HH location and perhaps contributing to my anemia.
Then, several scheduling problems with med center caused delays...but today I finally met the surgeon. The best ( only good?) part of these delays is that it gave me time to read this blog and formulate questions and concerns. INVALUABLE. Today I was actually able to have an informed discussion with the surgeon that I would never have been able to have without this site.

Going forward, I will have an esophagram this Friday, a manometry asap and my surgeon wants to repeat the EGD himself so he can take measurements, see the tissue etc. firsthand.

At the moment, he knows that I have a very large paraesophageal hernia, perhaps as much as a third of my stomach has lodged itself in my chest. He thinks a toupet/ partial fundo will work well, especially with a mesh repair of the diaphragm. That of course may change with the additional diagnostic information he gets.
I'm anxious but am feeling more confident that I am in good hands and I can handle this surgery.
I'll post more as I learn more. For now, again, thank you for this site and your contributions to it. It's so very helpful.
Peg
Posted 3/10/2015 3:58 PM (GMT 0)
Hi Peg!

Glad you found us! This thread will be a great place for you to ask questions and store information. As you get closer to your surgery and you begin to plan for your recovery, don't be afraid to ask for help. As well, during your recovery, ask all the questions you need to and feel free to get as graphic as you want. We've all been there and know quite well what you're experiencing!

We look forward to being part of your journey, and helping as best as we can!

-TonyG-
Posted 3/10/2015 11:58 PM (GMT 0)
Thank you, TonyG. I've already learned so much from this site and I'll be sure to have questions coming up! Today, I set up a manometry (this will be my first), a second EGD and then a follow up with the surgeon. There will be a two week wait after the last test before I can see the doctor and I'm feeling a bit frustrated by the length of time this is taking. In the back of my head, I'm figuring the way this has gone so far I might plan for additional postponements -- I've already had three reschedules -- so i'm a bit down about that. Patience is not my strong suit!
Posted 3/11/2015 7:13 PM (GMT 0)
Hi JanPeg,
I'm envious that you are having the surgery! I'm trying to get there, too; I just haven't yet found a gastro doctor who will refer me to a surgeon for a consult. Here's a good question to ask your surgeon:

Is there an option of using a biological vs. mesh for the repair?

I ran across this subject here in the past from a member of the 'wrapped club' (those who've had the surgery). I remember reading that the biological (pig intestines) last longer than surgical mesh.

I'd be interested to hear what he says about it.

the BEST to you, JanPeg
Posted 3/11/2015 10:31 PM (GMT 0)
Linda Sue,
i didn't know enough to ask him but he brought it up and said he will use a mesh that is biological material and that will take about six months to fully heal and bind with my own tissue. I was very pleased with how thorough he was in discussing the procedure ( not so much on details of recovery, though!). Thanks for bringing up and he question.
Posted 3/12/2015 1:05 AM (GMT 0)
I joined today and saw Peg's post. I had an HH repair three years ago. I wish I had had the support of this site back then. It has been a bumpy journey. My GI and surgeon told me I would be back to work in 10 days. It took 7 weeks. I ran into problems after surgery. I developed a esophageal ulcer, which took 6 months to cure. I was then left with debilitating nausea, so back to the doctors again. After getting that settled down, it looks like I have developed "Dumping Syndrome." The hero in my journey has been my GP. He was the only physician who warned me that I could be in for a life changing event. He and my family have been my support system. I have wished to have someone in my position to talk to. I am so glad to have found this forum.
Posted 3/12/2015 2:59 AM (GMT 0)
Yes, as thorough and detailed as my surgeon was about the procedure, he said very little about what the recovery will be like. He didn't seem to be glossing it over it just seemed like his focus is on the surgery and that he doesn't/ didn't really think about the recovery experience from the patient's point of view. I don't mean that to criticize; he seems to have the surgical knowledge that I am seeking. But I know that what I've learned from this site is invaluable and I will be as prepared as possible when that day arrives.
Welcome to the site.
Peg
Posted 3/13/2015 8:05 PM (GMT 0)
So, another step on the journey. . . I had the esophagram/barium swallow test today. Barium will never be a breakfast favorite but it really doesn't taste as bad as it used to. Luckily, my test was very early, the radiology center was efficient and the doc was right on time. Results expected next week. And then about a two week wait for the next test - manometry. Onward. For now, I'm planning to watch some basketball this weekend and try to practice patience with medical processes.
Peg
Posted 3/15/2015 8:09 AM (GMT 0)
Hi Peg,
I have had a toupet fundoplication, and although early days, am quite impressed with the results I have had so far. I just had a small sliding hiatus hernia, so not so many issues as you have had, although every day felt like I was starting with a bad cold, and trigger foods were an absolute no no! With not having a nissen fundo you may find you don't have a liquid diet for longer than the day of your op - I ended up making loads of clear soup, which I am now using as 'gravy' on mashed potatoes, as I was put on a sloppy diet straight away.
You sound like you have got yourself a very good surgeon there - and I hope all goes well with the rest of your tests.
Posted 3/16/2015 12:27 AM (GMT 0)
I'm glad you're doing so well, Sweetie UK and I hope you continue to recover quickly and without complication. I was very relieved when my doctor said he thought the toupet will work for me since it seems there may be fewer complications, at least initially than with a full fundo. Of course he will ultimately make that decision but either way, he said the plan is for liquids only the first two weeks. Sounds pretty restrictive but I'll be making a lot of soup to prepare, just like you did. If I can use it as gravy, all the better.
Posted 3/16/2015 2:11 PM (GMT 0)
Hi Peg,
I made loads of soup prior to op -and didn't really need to, I am still eating it though - just bulking it out. I suppose it depends on how you are swallowing after the op is done - and how your wrap sits - and what problems you had before surgery. Everyone is different. Most of the pain I have had is in my shoulders, although now I can feel incisional pain and discomfort, and getting out of bed or a low chair can be uncomfortable. I've been lucky not to have any great trouble swallowing - as yet, but I am being super cautious.
Posted 3/19/2015 1:14 AM (GMT 0)
Another rescheduled test! The surgeon pushed the EGD back by a week but since I already had a two week delay between it and being able to meet with him, it doesn't make a difference in the end.
Posted 3/19/2015 4:00 AM (GMT 0)
How frustrating! It's awful when you get yourself ready to have a test done and it gets put back! They always say things happen for a reason - hopefully the second appointment will go through smoothly.
Posted 3/20/2015 4:52 PM (GMT 0)
I need some counsel. I'm getting extremely anxious about the surgery. Unlike so many who post here, I only rarely have reflux or other GERD sysmptoms. However, I do have a large paraesophageal hernia that has pushed into my chest. I've been told that it should be repaired and that seems so logical. Yet, I read so many stories from people who seem to suffer new or worse symptoms after they have the surgery. I'm starting to think I should leave well enough alone and wait until I start to feel more poorly before I consider the operation. I'm going ahead with the remaining tests and will meet with the doctor to hear him put all the pieces together but this is taking such a long time! Doubts and worries are taking over.
Posted 3/20/2015 5:56 PM (GMT 0)
Hi Peg,
You have the type of hernia that merits an operation, and your doctor/ surgeon would encourage you to have the surgery. It's bound to affect your breathing - even if you are not getting a lot of reflux. I can't remember where I read on here - but someone once posted that if your operation is successful you are less likely to go into a forum to talk about it, you get on with your life. I like this forum, as I feel there is more of a balance, and there are people who come on here to tell of their good experiences. I am just through my operation (1 week ago) and feel fine. My main problem - sore shoulders, and I only take pain killers at bed time now, as that's the only time I get any discomfort. I didn't have a full nissen, had the 270 degree toupet, but I did have a hiatus hernia repair done at the same time. I read lots before I decided to take the surgery route. If you have a good surgeon, then you really have to give it serious consideration. I
Posted 4/15/2015 12:40 AM (GMT 0)
I finally met with the surgeon yesterday - such a long process to get the testing and scheduling done. What he told me made perfect sense, the tests confirming his tentative diagnosis. So, I have a paraesophageal hernia, approx 9cm. The hernia has caused my esophagus to bend toward the bottom, something they call "accordian esophagus" and this is what made my manometry test a little more difficult than usual. My swallow when drinking water is in the normal range but when tested with soft food (applesauce) it fell to about 30% meaning that I had to swallow more than once to get soft food to move in 7 out of 10 cases. In itself that doesn't seem to matter but it told the surgeon that my swallow is too weak to handle a full Nissen. He plans a partial/ Toupet. He will also repair the diaphragm with a biological mesh that he says melds with tissue is about 6 month. It is not a synthetic. He intends to do it laproscopically but warned that even though it rarely happens sometimes they need to convert to an open procedure and to be prepared for that very low but possible situation. He expects me to to in the hospital for one or two nights and then home with pan Ned's as needed. My surgery is scheduled for May 15!
Having become a steady reader on this site ace me excellent questions to ask my surgeon - I brought a list with me but he was so thorough that by the time he finished explaining things, I only had a few things left on my list.
Since they have come up recently as questions in other threads, let me add a few other things. He said it is his usual practice to catherize urging surgery and that he inserts a tube from the nose into the stomach in order to keep fluids from accumulating in the stomach during surgery. It is also a way to control for possible nausea. The cath is usually removed right after surgery but the nasal tube usually stays in until the next day.
He said that the toupet and Nissen have improved their longetivity a great deal with recent surgical improvements, barring complications, they frequently last 10 to even 20 years. i know some here have discussed this.
My most frequent thoughts about all this so far is that it takes quite a long time from initial diagnosis to repair. I was not expecting to have so many scheduling delays but that seems to be the norm.
I'm also very anxious about the procedure. Trying to decide to go through with this, since I am not in immediate pan, is and continues to cause second thoughts. However, getting the test results and speaking with the surgeon have helped clarify the need to go ahead.
Finally, as I waited for he doctor yesterday, I looked around me and saw a wonderful medical facility and thought how very lucky I am to have this option to choose when so many people in far more dire straights do not.
I'm so very grateful to have found this site.
So now, it's wait until May 15th!
Peg
Posted 4/15/2015 1:14 AM (GMT 0)
One other thing. While the manometry showed the length of my esophagus was weak, it showed my LES is extremely strong, even bordering on hypertensive. All this is likely related to the bending, accordion effect. When the hernia is pulled back down, my esophagus should then straighten and it's probable the pressures throughout will change, hopefully for the better!
Peg
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