Very large Paraesophageal Hernia

Hello Meandonlyme!

Wishes from Finland.

You seem to have the same 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
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.
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 (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.
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
)

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)

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!

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.

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. 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...

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

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?

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)

May i ask how large your hernia was? I'm going through a very similar situation only it's taken 4 years since I presented with severe iron deficiency anemia and tests revealed a 6cm HH but as there was no bleeding the gastroenterologist failed to tell me about it. Now I am very sick and have had my heart and lungs, checked. Finally an Allergist saw the hernia in my chest x-ray then looked at the tests from 2011 and was sure my pain, shortness of breathe , bronchitis, fatigue etc. was because of this hernia. So now I'm finally having a barium swallow test, endoscopy, and meeting with a surgeon all in a weeks time. The barium swallow revealed a Type III Paraesophageal hernia. I don't know the size, but the nurse said 1/2 of my stomach was in my chest. The hernia was 6 cm in 2011 when the gastroenterologist never bothered to mention it to me. I'm so afraid what other damage they are going to find. What's so strange is I've had no symptoms of acid reflux! I know I must have the surgery as I am miserable. I've lived on my couch for the past 4 years. I also have Fibromyalgia, chronic back pain from a back injury and surgery, chronic migraines, and the aforementioned iron deficiency. So it was easy to blame the hernia pain and shortness of breath on the fibromyalgia as I had no idea I had a 6 cm HH! Hernia Hysterics from Sylvie in Chicago. Help

Hi Sylvia,
I had a 9cm paraesophageal hernia that I had repaired by nissen fundoplication. I had previously suffered from acid reflex but the reflux had subsided because my hernia was so large that not much was able to seep up pass the cavity as my stomach was half way up into my esophagus. I was constantly short of breath , had trouble swallowing water and bread was a nightmare. I was burping all the time. No other damage was found when they went in to repair mine. My surgery and recovery were both very non eventful and I'm happy to say I fell 100%.

Fundrider, I've become so self-centered right now. i just reread your response and I want to say I'm so happy for you that your surgery went well and you now are feeling at 100%!
All the best,
Sylvie