Very large Paraesophageal Hernia

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meandonlyme
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/1/2011 8:25 PM (GMT -7)   
I'm new here and recently been diagnosed with a very large paraesophageal hernia. No symptoms brought it to the attention of the physicians until I was scheduled for unrelated minor outpatient surgery and blood tests came up that I was severely anemic -- for unknown reasons.  Went through alot of blood tests, colonoscopy, upper endoscopy until the devil was found. Had barium swallow and UGI to confirm its largeness and a manometry that they couldn't complete because of size, restrictions. So I have a type III hernia and surgery is required. I am waiting until second week of September. Interviewed and met with two different surgeons - both agree no choice but to proceed. I am nervous about all of this as have had no problems whatsoever with eating, etc. I did have severe pain on two prior occasions 1 1/2 years ago and a year ago that I went to see family doctor about and was given prescription for some Prilosec and no tests.  Surgeon says pain was probably the movement of my stomach into the chest. I am nervous about all of this and the notion of the recovery time, potential risk and symptoms many in different forums I have read have after the surgery. Doctor says probably in the hospital 2-3 days due to size of the hernia. He will do Nissan fundoplication with the repair.  How long have any of you waited from diagnosis to surgery? I know there are risks with waiting the few weeks but due to some other issues in schedule have to wait and promised I would drop everything to have surgery immediately if any symptoms.  The post operative diet does not sound like fun - did you prepare foods ahead of time? I will have more questions - right now I'm just freaking a little, some days alot!

miss Lapponia
Regular Member


Date Joined Jul 2011
Total Posts : 22
   Posted 8/2/2011 1:39 PM (GMT -7)   
Hello Meandonlyme!

Wishes from Finland.

You seem to have the same devil devil as I had.

My history is that it was January 2010 I was going with my boyfriend to donate blood to local Red Cross. I was feeling very healthy and I supposed everything is ok. Somehow my Hb was 85 shocked
After that...finding the reason to my anemic my doctor took every possible bloodtest and nothing special was found. Then was the time to Gastroscopy. The result after that was: La C esophagitis, very large hiatus hernia and open LES. After the second G-scopy he recommended me the NF and wanted surgeon's comment to my situation. I met the surgeon twice and he decided to put me to the surgery-queue.
4 months later I got a call from another surgeon. He wanted me to his patient, when this hospital will start gastrosurgeries assisted by the robot. I said yes to him to be his patient, OMG!
Then came the operation (on March 10th 2011). Everything went so well. After the surgery my surgeon came to see me. He said, now the surgery is over and there is a "floppy-Nissen"...but this very large hh was not just like that...it was a paraes.hernia. shocked
Thank God, I had so experienced surgeon. He thought before the operation, that this will be NF + hh repair...but when the surgery was on, he had to change the hh repair to the paraes.repair...and this paraes. hernia repair is so much more challenging than hh-repair.
This was my story of my NF and paraes.hernia repair.

As I mentioned in Gregg's thread, my recovering time was (too) easy. Before the surgery, I was so scared of all those possible complications after the surgery....but somehow I got none of them turn (no swallowing problem, no shoulder/stomach pains, no diarrhea, no stitch problem)

I had my post op diet almost one month. In this period I ate only liquid; soups, smoothies, yoghurts, very thin porridge etc.
(My surgeon recommended to go to soft food after 2 week period, but I just wanted to be sure, that my stomach is ready for the next step...and this 4 week liquid period was my decision).

My recovering time was peaceful. I just enjoyed every day to feel my body and condition better and better. I got 2 week sick leave and I think that was enough for me.

In Finland we also have a very good GERD-forum!!! This was superb place to hanging on before and after the surgery. yeah
As you can imagine, Finland is so small country and I noticed that I was the only one in this forum with this special-hernia (=paraes.). Now I want to hear other stories from patients who has/had this special-hernia. Does somebody have some exams after the surgery, what exams and when?...or some complications after years which is still linked to this surgery?...or is here someone who has redo this hernia-repair?

All the best
I'm sure you Meandonlyme will also succeed!

-Sari-
(again, sorry about my English, try to understand me
wink )

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12643
   Posted 8/2/2011 6:04 PM (GMT -7)   
Welcome both of you. Another veteran poster here (Alicie) had the same surgery. I hope she comes along soon and talks to you. My Aunt had the surgery several years ago. I had the basic nissen done.
Joy

portaloo
Regular Member


Date Joined Jun 2011
Total Posts : 42
   Posted 8/8/2011 2:45 AM (GMT -7)   
Please dont worry.  You will be so well looked after and will feel no pain.  They will explain that you will be given the very best pain relief after surgery and will not feel any pain.  That is very important and true.  I had the op twenty years ago.  You will not feel like eating for a while but do as they tell you and you will recover quicker. A little and often, your stomach will be smaller. 
 
The surgeon called me the lady with the incredible stomach.  My hernia had got so large it had migrated into my chest and was squashing my lung and laying close to vital organs and was upside down.  I was terrified once I knew what it was.  But I had been like that for five years previously when it had been misdiagnosed as severe anemia.  I had no symptoms except for breathing problems.
 
Enough about my one, you will be ok.  by the time I have posted here I guess you will be recovering from the surgery.  The only problem after was dumping, feinting.  Usually caused through not eating regular or using too much energy and getting low blood sugar.   Because the stomach is folded and been altered the absorption is slower.  so you do have to watch the diet.
 
I do not have the dumping now and have no problems with eating apart from things getting stuck and having to go to the loo to bring them up.  Usually because I have not chewed them enough.  But I can breathe and do not have much tummy pain at night.  I dont have that constant empty feeling in my tummy that I had pre op.
 
Hope this finds you well and recovering , Welcome to what I term as Bionic, remade people, who value every day,  Lots of laughs.  Look forward to a long life. x
 
Ps  the surgeon said it will never happen again and cannot come back.  Rare operation so family doctor did not know what they did.    Because life support machine was used have slight memory loss as happened years ago with open heart surgery and use of life support.  Think this problem now resolved with medical advancement.

Post Edited (portaloo) : 8/8/2011 2:53:20 AM (GMT-6)


meandonlyme
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 9/14/2011 9:48 AM (GMT -7)   
Thank you very much for the information and support all. I am now only five days from surgery. My work schedule kept me very busy this last few weeks and I could not visit this site to read the responses. Against my surgeon's advice I had to travel out of the country last week for business for several days and was very careful to not lift or do anything to aggravate the situation to avoid having an emergency, although the doctor said it would be unlikely.

I am not looking forward to the surgery and recovery. Difficult for me to fathom going from symptom free situtation (except for extremely low hemoglobin caused from the Paraesophageal hernia prior to blood transfusion) to one of liquid and careful diet, going from active lifestyle to one of restricted activity.

The doctor said due to size of PEH, I will be in the hospital 2-4 days. I know I am in good hands and have an expert for this type of surgery, however, the anxiety is increasing -- I do just want it to be done and over with now though.

starryblu
New Member


Date Joined Sep 2011
Total Posts : 9
   Posted 9/14/2011 11:03 AM (GMT -7)   
I have the same issue as you. I'm getting ready to have surgery in 10 days, and I am feeling very anxious myself! I hope all goes well for you. Good luck!

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3673
   Posted 9/14/2011 3:57 PM (GMT -7)   
I had surgery for GPEH about 2 years ago. It was a long surgery, 5 hours, because it takes a lot of time to pull the stomach back down into the abdomen. Otherwise it was pretty normal except for a 4 day hospital stay and a somewhat lengthy recovery. Mine was caused by a high speed accident, seatbelt and airbag saving my life, but still a huge impact.

I got back into trouble after taking a medicine that caused me to try to vomit, only about 3 months into recovery. Only a little blood came up, but I knew I'd wrecked the wrap. Since then I've had chest pain on eating anything. I had another vomiting event recently from a burst appendix which has caused me even more trouble eating. When I got these events I took Zofran, but it didn't work fast enough. I got the heaving stopped with Paregoric when I thought of it. I'm now consulting with my gastroenterologist and a surgeon about getting a repair done. I'm a bit concerned because my esophagus is was a little short for the first surgery, and I'm scared of the Collis procedure. I'll be spending some time consulting, getting at least one second opinion.
Alcie
 
 

meandonlyme
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 9/16/2011 6:17 PM (GMT -7)   
Thanks everyone - three days to go until surgery day. GULP. I just now want to just get it over with. Had preop chest xray, EKG, labs today. Doctor says because of size of PEH plan on hospital stay for 2-4 days and a bit longer in surgery. Some questions for those of you who went through this already:

How long before you were allowed to drive and work?
Were you able to travel comfortably (I travel for my work and figured 4 weeks was good 'off' time)?
I know the doctor will provide more detailed instructions for post op, but inquiring minds want to know more -
How long were you on clear liquid diet before swtiching to full liquids, then soft foods?

Starryblu - it'll be interesting to share notes after surgery - I tend to think too much so will want to know if what I feel, etc. is the 'norm', although I know our condition is not common so perhaps everyone's experience is different.

miss Lapponia
Regular Member


Date Joined Jul 2011
Total Posts : 22
   Posted 9/17/2011 12:23 PM (GMT -7)   
Alcie:

Thank God, you are still alive...what a story you told!

What was your first symptoms, when you understood everything was not ok with your operated esophagus? Was it that chest-pain what you mentioned or was there some other symptoms? That's what I'm wondering now, which is the first mark that the devil is re-herniating devil and is this the abdomen ultra-sound & thorax x-ray which shows the facts? What exams did they take in your case?

I do want to hear how your story continues...Hoping all the best for you :-)

Meandonlyme:

Hmmnn, I was wondering, you are not going to go your surgery, because you weren't here...but you had busies with your work. Good reason :-)

My surgery took 2 hours. I think it's quite short time for that PEH-surgery. I got 2 weeks sickleave and after that I normally took the bus to work. In my opinion the first month sitting the bus was uncomfortable time to travel. I put my hand towards stomach and hoped no curves was coming. But otherwise there was no negative to say.

After the surgery I "ate" total liquid two post op day in the hospital. My last lunch in the hospital (2nd post op day) was mushed fish-soup and vanilla pudding. (It was superb after those water, tea/coffee, juices...) and I continued with this line at home.

I want to say to you: Good luck to you & your surgeon for Monday! Just leave your devil devil to the hospital! Try to relax before the surgery!
Hugs!!!
-Sari-

Paraesophageal hernia repair & "floppy Nissen"
(assisted by the robot)
on March 10th 2011.

starryblu
New Member


Date Joined Sep 2011
Total Posts : 9
   Posted 9/17/2011 3:31 PM (GMT -7)   
I agree, it will be interesting to share notes! I myself over-think things, and worry way to much about what is happening. Our surgeries are a week apart, so you will be a step ahead of me on everything that is happening. I hope all goes nice and smoothly for you, and I will be keeping fingers and toes crossed!

starryblu
New Member


Date Joined Sep 2011
Total Posts : 9
   Posted 9/17/2011 4:02 PM (GMT -7)   
Oh, one thing I wanted to mention...you know, I didn't know that a paraesophageal hernia was uncommon until I started doing a bit of research? AND that I didn't even know that was what I had? Nope. Happened to read it when I got confirmation of the surgery scheduling, the type of surgery was on the heading of the paperwork. I don't know why they didn't tell me this, unless they thought I was too dumb to understand. I'm kind of annoyed about that. Anyway....again, best wishes to you. It sounds like you are well informed. I wish I had more people on my side, here in my life. Everyone keeps telling me to not worry, and they don't want to talk about my surgery. So I just hush, and don't even know the right questions to ask. I'm assuming I will be taken care of. It sounds like you have everything under control :)

meandonlyme
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 9/17/2011 7:57 PM (GMT -7)   
@ starryblu. I had to do alot of research to get much information about this condition. Considering I had absolutely no symptoms except an extremely low hemoglobin found during pre op testing for another surgery procedure - I wouldn't have known until much later or until I became ill or in trouble from the low iron or the PEH. I was in a fog for the first several weeks as it was surreal - no GERD, no reflux, etc. so I couldn't understand what was happending. Blood transfusion made me realize my body was in a revolutionI interviewed a couple of surgeons once I learned that this type hernia is not real common and was rather put off by one surgeon who didn't like my husband and I asking how many large/giant PEH procedures he had done. He kept saying you can have someone else do it if you feel more comfortable -- he acted offended and it was an appropriate question. His bedside manner just didn't make me feel good - although he came highly recommended. The doctor I chose took his time, drew pictures, to help me better understand (although still had zillion questions). I had asked the first surgeon how big the hernia was and he said it didn't matter - it did to me! I am a 'googleaholic' so did a bit too much searching at first taking my medical results, lab tests, endoscopy, etc. and looking up every word, phrase, etc. to try to understand...

starryblu
New Member


Date Joined Sep 2011
Total Posts : 9
   Posted 9/18/2011 6:00 PM (GMT -7)   
meandonlyme,
that does sound like a very upsetting situation! it sounds like you were very smart to do your researching and checking into different surgeons. I lack confidence in the decisions that I make, and just take the word of the doctors that keep reassuring me that they would not steer me wrong, don't randomly suggest surgery, etc etc. And I really have been sick for quite a long time, so it really does make sense. My primary care doctor was the one that actually first alerted me to the fact that mine was becoming a problem. I knew that I had a hiatal hernia, but not that I had one so large, and had actually migrated into my chest. He told me about it when I had a chest xray for a bad case of bronchitis. From what I read, they do often turn up when being checked for other conditions. It IS very annoying, isn't it? How can your doctor tell you that it doesn't matter how large it is? That makes me mad for your sake! I don't think to ask the proper questions. I know that mine is 7 centimeters, but I really have no idea how to gauge that. I want something to compare it to. Is it the size of a walnut? An egg? An apple? All I have to go by is how far apart my gastroenterologist spread his fingers and said "it goes this far into your chest." Well that's not helpful. It's my body, I want to know! I really do like my surgeon very much. But I was nervous when I saw him. They tell me to call any time with questions. Well that's great, but the nurse can't help me much, and the doctor is always so busy. I guess I will just be patient, and in time it will all get sorted out.

Aug25myturn
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 9/18/2011 7:37 PM (GMT -7)   
OH MY GOSH...I just had my surgery three weeks ago. Mine was so big it was sinking into the muscles of my chest. It was a sliver, and I mean a finger nail sliver away from my heart. When they pulled it up or is it out? Mine was so big it left an impression in the muscle, next to my heart. My doctor said I was a textbook case. He was amazed at what he saw. This thing was HUGE. only for me, they didn't know because it had started sinking into my the muscle. Crazy stuff. My first test three years ago revealed a large Hernia.
In June, it looked smaller, the Barium test, showed it smaller, and the manometry was a nightmare to do. Number of tries, and I was crying by the time were done. It was horrible.
They took pictures of mine. Before, during and after. It's crazy to see them. That huge thing was sitting in my chest, or should I say sinking into. Thank GOD I had that surgery.

My Doctor is one of the top ten on the East Coast. I am so blessed to have found him. He knows his stuff, and He told us repeatedly after surgery, and then again at my two week check up that I really, really needed this. He showed us the pictures several times explaining what happened, and why I was so messed up before hand.

I waited too long. My recovery has been harder because I waited. Before my surgery I was messed up bad. It kept getting worse and worse. I should have had the surgery TWO years or more ago. I didn't. I kept waiting.

Now, I am three weeks out, and glad I did it. This forum is going to HELP you more then you realize. It's helped me, and helped me, and helped me. The people here are awesome, and everyone has GREAT advice.

Your time is almost here. I will be praying for you, and that ALL goes well. I am so glad I did it....I am still recovering, but this is way better then how I have been living.

Let us know how you're doing...

Blessings!!
Gina

meandonlyme
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 9/24/2011 3:10 PM (GMT -7)   
Hello all....today is Saturday and surgery was on Mondsy -came home Thursday afternoon. Finally sufficient energy to use my husbands's ipad.

Surgery was about 2 1/2 hours long. Defect was larger than thought about 11.5 cm apparently. Only issue in subset was hernia sac adhered to lung and they had to clip and I had small pnuemothorax which resolved.

First 24 hours I felt pretty good and walked the halls a couple times. Incisions barely bothered me. Was short of breath a bit but doctors and residents said expected after tooling around near my heart and on my lung.

Was a little nauseous 2nd night and doc decided to leave ng tube in. During evening was apparently a little low on oxygen so they hooked me on a low dose. Third day felt tired and shaky....guess heart began racing and went into atrial fibrillation..focus became getting heart rate of near 170 down with keg, meds, and cardiology consult. Note never had an issue before. Finally went into normal rhythm overnight but have tto continue heart meds and daily aspirin for 3-4 weeks with cardiology follow up. Good news. It got mind off surgery :) doc said not uncommon when so much adherence in chest and ultra large size. Said after month probably no more follow up. He said when defect removed and stomach pulled down the other organs often fight for old space back but traumatized so they overwork. Works for me.

On clear liquids ng tube out and oxygen removed fourth day. Went home that afternoon. No real problems and on full liquids. Have to watch fatigue. See surgeon in follow up Wednesday.

babets
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/5/2011 6:04 AM (GMT -7)   
Hello,
I have stumbled across this website in doing some research and I am glad I have. My dad who is 63 just had this surgery on 11/3/2011 and is still in hospital in ICU. He still has ng tube in and is in terrible pain. He was like most of ya'll where he had to pain previous to surgery. He was just losing blood and through a series of tests found this hernia.

He should be moved to a regular room today possibly. They will have him up and trying to walk @ some point today. His doctor stated that he will be in hospital 5-7 days. Is there any advice that you could give me to help his healing process?

skyeyes99
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/26/2011 10:08 PM (GMT -7)   
Hi all!
 
Well, for an uncommon condition, I am glad to read that there are patients that have experienced this and shared what you have been through with your paraesophagial hernias.  My father (age 59 yrs) just recently underwent emergency surgery for his paraesophagial hiatal hernia only 10 days after a colon resection surgery. 
 
He spent 8 days in the hospital after his second surgery and seemed to be doing well upon our arrival home. He has lost 30 pounds since December 1st and seems to have low interest/motivation in eating.  I know that the diet doesn't include the most delicious and appetizing items out there but I was hoping that I could get some advice from patients that have experienced a similar surgery.
 
My fathers stomach has been sewn to his esophagus.  He has been eating 3 small meals a day with two small snacks and seems to have been doing well with that.  However, today marks two weeks since his surgery and we tried to advance his diet to more "solid" foods.  Today, he tried pasta for lunch as well as a small sandwich for dinner and shortly after dinner he vomitted. Perhaps we over did it?
 
Did any of you experience difficulties when you advanced your diets?  Also, did any of you experience low energy or lack of motivation to eat and get active (walk/read/etc)?
 
Thank you for reading and I am looking forward to your thoughts!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6971
   Posted 12/26/2011 10:24 PM (GMT -7)   
Hi skyeyes,
Welcome to Healing Well!  Glad you've joined us.  Eating after hernia surgery and Nissen fundoplication ("stomach sewn to his esophagus") is challenging--especially in the early weeks.  Does your father have nausea medication on hand?  If not, he should get some, as it's not good to vomit during early stages of recovery.  Vomiting and retching can cause damage to the repair.
 
What he might have experienced is more of a "hairball" episode...with whatever food he ate getting stuck, then coughing it up.
 
However, that said...anti-nausea drugs are a must post-Nissen to ensure that he doesn't vomit in the future.  The meds most often used here are Zofran (the kind that melts under the tongue is best), Phenegran, and suppository Compazine.  If he doesn't have anti-nausea meds, try to get scripts ASAP.
 
Here is a link to a chart that provides guidance regarding food choices. http://surgery.med.umich.edu/thoracic/clinical/procedures/MushyDiet-Nissen.pdf
 
I was told by my surgeon to stay away from sandwiches, untoasted bread, and steak for at least 8 weeks.  Bread is very clumpy and doesn't chew to a liquid. 
 
He needs to be sure to take very small bites and chew whatever he is eating to a liquid.  When I had the surgery (a regular hernia, but the Nissen fundoplication is the same) my surgeon told (starting on Day 6) that I could eat "anything that could be chewed to a liquid".  It's normal that he doesn't want to eat much at this point.  The top of his stomach is swollen, and the brain interprets that as fullness.  Be sure to tell him to take tiny bites and chew, chew, chew, chew.  He shouldn't swallow anything that hasn't been chewed to a liquid.
 
My son accused me of eating as if I were anorexic!  Your father's wrap is at peak swelling right now, and it will be especially difficult to eat at this point.  Once past the two week mark the swelling will begin to subside and his eating will get better. 
 
I suggest that you start a thread for your father on the main page of the forum.  GERD - Heartburn  That way other members can meet you (and maybe he can even get on and read posts) and offer ideas, advice, and support.
 
Again, glad you've joined us!
 
Best wishes!
Denise
 
 
 

Post Edited (dencha) : 12/26/2011 9:31:59 PM (GMT-7)


imstarryeyed
Regular Member


Date Joined Nov 2011
Total Posts : 95
   Posted 12/26/2011 10:39 PM (GMT -7)   
Hi Skyeyes!

I seem to share many similarities with your father. I am also 59 and had surgery for a large paraesophageal hernia on December 13th. It was a non-emergency but my surgeon said it needed to be done soon. I was in the hospital for 2 days.The first day I was on clear liquids, the second day full liquids and had no problems at all.

When I had staples out one week after surgery, since I'd had no problems with diet, he advanced my diet to soft. He advised soft vegetables, canned fruit, pasta chewed well but NO MEAT, NO SALAD or uncooked veggies and NO BREAD. Untoasted bread is very hard to get down. I've had no problems so far but I eat small amounts, chew well and when trying something for the first time take a bite to try it then wait a couple of minutes.

I feel lucky as I've had no problems eating. (Pain is a different issue.) My surgeon said he'd learned to not make the wrap (nissen fundoplication- where stomach is wrapped around esophagus and stitched to it) too tight or there are problems swallowing. Keep in mind, too, that 2 weeks after surgery is peak swelling internally. I'm surprised your dad can vomit. I don't think that's supposed to happen. I think you should check in with his surgeon and maybe get anti-nausea pills.

I don't feel hunger the way I normally do but it is beginning to return. I tend to eat several small meals (soup, soft egg, yogurt, pasta) to keep energy up. My daughter, who flew in to help me in recovery, has kept me active. I've pretty much been doing all the things I did before surgery but for smaller amounts of time and with breaks. Of course, NO lifting, bending, reaching. Since your dad had the colon surgery shortly before this one he has other issues which I can't address.

Somethings that are more solid that I've eaten that make me happy are saltine crackers. Crunchy but dissolve well. I've also made artichoke lasagna and it went well. I feel like I could eat anything but I don't want to risk it yet.

Good luck to you and your dad. I hope this has been a little helpful!

Starry
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