Approaching Possible Open Nissen Fundoplication #4

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my7pinecones
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Date Joined Feb 2010
Total Posts : 74
   Posted 2/8/2010 5:06 AM (GMT -6)   
Over the past 25+ years I have had 3 open NF. Each has been worthwhile. Originally, I was told by several surgeons that they could only remove my esophagus replacing it with a piece of intestine. I refused and eventually found a surgeon who though he could provide surgery. He told me after a 7 hour surgery that he expected I'd get 3-5 years and the juncture would begin to deteriorate and that I couldn't have any added repair. This surgery was an open NF, stomach repair and Hiatal Hernia repair. The surgeon was right, symptoms started to return, but by the time "I became weary of the symptoms" (close to 10 years) procedures had improved and I had another surgery. Symptoms reduced and I was again a happy camper. Again, I was told 3-5 years...surgery #2 and #3. It has now been about 10 years and I'm again very miserable. Many tests later with the scope they can see evidence of multiple raps around the bottom of the esophagus none of them is functioning, a moderate size Hiatal Hernia, and the GEJ (sphincter) is widly open and the prior surgeries have made almost a tunnel appearance under the esophagus definitely allowing the acid to go back and forth. The doctor said my esophagus looked like a metal pipe. Entering the stomach and fundus there a deep folds, likely from the past surgeries. The doctor dilated the esophagus. I am taking Kapidex 60 mg, which helps a little. I will visit with a couple of surgeons to see if they can do yet a 4th surgery. Again, procedures have improved.

My biggest difficulty is an inability to breathe especially if I bend over. I am experiencing shortness of breath much of the time if I do anything...even sitting relaxed and talking I get out of breath. I have been hoarse for several months...sometimes with near complete loss of voice. I have a debilitating level of fatigue, not common for me. I don't understand these kind of symptoms. Any ideas? Besides all the esophageal tests...motility, stomach emptying, etc. the docs are looking at pulmonary function, several heart tests, etc.

As difficult as this has been, lump in throat, no voice, bad reflux, food and liquids sitting in esophagus, cough, chronic bronchitis...things like that, I am so grateful for the 3 surgeries and several dilation's that I have had. If a qualified surgeon can find a way to repair the damage and restructure and repair the HH, I will be ready to get the surgery. Yes, there is a trade off...but for me, nearly 30 years later, I still have my esophagus and am hopeful to get it again working well. I will find out next week if there can be another repair. I sure hope so. I'm pretty miserable at this point. I don't know what is causing the shortness of breath and hoarseness. I am diabetic and am 67 years old. I've had a lifetime of experience.

mookiemoomoo
Regular Member


Date Joined Aug 2009
Total Posts : 150
   Posted 2/8/2010 10:50 AM (GMT -6)   
you have gone through so much already. i have just had nissen done lap way and feeling loads better . so i know where you are comming from being misrable chin up hope you get the news you want
Michelle


my7pinecones
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Date Joined Feb 2010
Total Posts : 74
   Posted 2/8/2010 12:58 PM (GMT -6)   
Hi Michelle, Glad to hear you are feeling so much better! I would had a lap procedure done, if it could be. If I can have surgery, I suspect it will be open. I would like all the old folds and previous non functioning wraps, scar tissue, etc. removed. I hope you continue to enjoy relief!

StaceyA
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Date Joined Feb 2010
Total Posts : 114
   Posted 2/8/2010 2:33 PM (GMT -6)   
Let us know what you find out. I sure hope that they can find a way to help you. When will you see the surgeon?
Much luck!
Stacey

my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/8/2010 2:42 PM (GMT -6)   
Thanks Stacey! I see one surgeon tomorrow and will see another (2nd opinion) in a couple of weeks. Procedures have changed a lot since my first surgery...rib retraction and lots of repair. I am hopeful. The surgeries have been great successes for me...only not long lasting. I'll post more when I find out.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 2/8/2010 6:20 PM (GMT -6)   
I don't know where you are but there's a world famous surgeon in Pittsburgh who does these types of repairs. He works with cancer patients a lot, does all kinds of really tough esophagus surgeries. He might even be able to do it laproscopically. Just because you've had open before doesn't rule that out!
Alcie
 
 


my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/8/2010 10:00 PM (GMT -6)   
Thanks for the info, Alice. I'll track him down and see what my options are.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 2/9/2010 6:57 AM (GMT -6)   
I'd post the name, but that and posting helpful websites isn't allowed.

I wish there was helpful info coming from admin! There isn't anything anymore. It would be really helpful to newbies if there were links to good websites that aren't selling anything.
Alcie
 
 


my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/9/2010 9:30 AM (GMT -6)   
That's true. I did some research and found the leading center. I am emailing the head esophageal surgeon to see if I can get some counsel and either a referral or to find out if my "inadequate" insurance might be taken at their massive hospital complexes. I will talk with the surgeon my GI doc wants me to see in a couple of hours. I am also going to get a 2nd opinion from the doc who did my last surgery. I was very satisfied with his work. I am hopeful viable solutions can be found, implemented and will provide needed relief.

Is there a procedure with the admin of this wonderful site to request or petition for quality research, sites, etc. I notice, being new to this site, that there are some very old threads. Might I find useful information if I go back and read the early ones? I jumped around yesterday, but found many, although interesting, were quite redundant.

I would like to read a thread which relates to diabetics with GERD and post op NF and diet (taking medications, not insulin). I have read some people can't or are advised not to take any medications, pills, etc. I need to take medication (thyroid, diabetics). In the past 3 esophageal surgeries I've had, I was able to swallow pills, including pain meds.

Thanks for your interest, time, and support.

StaceyA
Regular Member


Date Joined Feb 2010
Total Posts : 114
   Posted 2/9/2010 3:12 PM (GMT -6)   
I had to crush my meds. The synthroid was very easy to crush. My non essential vitamin type things I just left out. I think you might have some luck looking at GNC for liquid vitamins. The pain meds that were prescribed were liquid. I was prescribed an antibiotic during recovery that was on the large size to crush up. Don't worry about this part too much.
Best wishes!
Stacey

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/9/2010 5:03 PM (GMT -6)   
My Synthroid was small enough that it would pass through easily. My big pills I crushed and mixed with applesauce.
I'm pre-diabetic so my doctor put me on a sugar-free post surgery diet. It worked great, I lost 20 pounds.

Joy

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 2/10/2010 10:52 AM (GMT -6)   
I've always had to crush large pills, never could swallow them. I put the bad tasting ones in flavored yogurt. Applesauce and prune juice with pulp are good too. The prune juice is good for stuff that is constipating. Lots of meds come in liquids too.

I've found that a no sugar, low white carb diet works for losing weight. I ate so often post-op that I didn't lose weight, and I need to drop ten pounds. I thought I would lose a ton of weight, from reading the posts, but it didn't happen. So now I am back to a basically diabetic diet and just trying to control my portions.

You can search the forum. I'm sure a liquid diet can easily be made for you. I made my own diet in advance and froze small portions and took them with me to the hospital because I am allergic to sulfite and knew they had absolutely NO food I would tolerate. I made my own broth from chickens I cooked, ground the meat in a food processer for soft diet later. I cooked my own veggies, made broth from them, food processed them for soft diet. If you don't trust thehospital dieticians, and I wouldn't, you can do the same. You should get to talk to one, but ask them about their diet. I was able to look up what my hospital recommended online. I knew I couldn't eat any of it!
Alcie
 
 


my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/11/2010 5:26 PM (GMT -6)   
Thanks for all the great ideas. I'll use them. I know from the past surgeries I've had that the hospital dietitian isn't concerned with nutrition. I was told by one that it really doesn't concern them because people are only there a few days. With my first esophagus surgery (many years ago) I was on clear liquids (4 oz maximum) at a time, for 6 weeks and then unclear liquids for 2 more weeks before soft foods. I didn't know at the time it would be so long and had made no advanced preparations. Fortunately, I have a dear friend who is an excellent dietitian who came to my rescue!

Looks like there will likely be surgery #4. The surgeon I was referred to said "no" but knew the one surgeon who does these type of repairs. The doctors talked and the doc agreed to meet with me in a couple of weeks. I am hopeful he will know how to fix it all up again!

Post Edited (my7pinecones) : 2/27/2010 7:27:25 PM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/11/2010 8:18 PM (GMT -6)   
Yeah, I hope he's able to fix you up.

Joy

bruta
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 2/12/2010 7:57 AM (GMT -6)   
Good luck to you pinecone,i hope they can fix it again.

gerdedout
Regular Member


Date Joined Feb 2010
Total Posts : 39
   Posted 2/14/2010 10:21 PM (GMT -6)   
Goodluck pinecone, I hope everything works out

mookiemoomoo
Regular Member


Date Joined Aug 2009
Total Posts : 150
   Posted 2/15/2010 11:53 AM (GMT -6)   
good luck pine cone will keep fingers crossed for you
Michelle
Nissen 23/12/09


my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/27/2010 7:40 PM (GMT -6)   
Hi Again,

Saw the surgeon who the previous surgeons referred me to who is expert in complex esophageal repairs. I will have yet another test so he and his assistant surgeon can more specifically see the specific situation with my anatomy. Although he is expert in lap redos, he said mine was too complicated to consider anything other than the 4th open surgery. Their biggest concern will be whether my esophagus because of its condition, age, multiple surgeries, etc. will hold up after a successful repair (hernia, juncture, connecting areas, wrap, etc.). Optimistic me says it will!! He suggested I could be in the hospital anywhere from 1 week to 1 month (if there are complications). I told him the complications were already there...and I won't be having any new ones LOL. He told me that attitude had a lot to do with successful healing. I reminded him that I was a retired psychotherapist who knows how true that is!! He suggested he could hire me to help some of his patients deal with their fears and attitudes but I declined. We talked about the complexities and possible outcomes, risks, etc. for about an hour.

I will see him on March 15, after the results of the upper GI test. We'll decide when to schedule at that time. I expect (hope) to have surgery around the 10th of April!!

I was thrilled that I was able to find surgeons who are qualified, experienced, competent and willing. I'll post more when I know more.

my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 2/27/2010 7:48 PM (GMT -6)   
Hi Again,

I forgot to mention that the several heart tests I had all came back great...especially nice to hear being diabetic and 67 years old! The pulmonary function tests were overall really good, also. I have, however developed asthma because of the completely open junction. I also have developed in the past few years asthmatic bronchitis. I wheeze whenever I exert myself the slightest amount or bend even an inch. The pulmonologist put me on a steroid inhaler and another puffer prn. I don't like taking these but will until the surgery. The hoarseness which I have had continually since October (it was sporadic before...many times a week) may leave after the surgery. Sometimes I have absolutely no voice...other times hoarse. The surgeon said it will be months and maybe years...or it may not correct. I said, I will!

Post Edited (my7pinecones) : 2/27/2010 7:29:31 PM (GMT-7)


pandacrazy
Veteran Member


Date Joined Jan 2005
Total Posts : 1326
   Posted 2/28/2010 5:08 PM (GMT -6)   
Welcome Pinecone, I look forward to hearing how things go. I had my wrap done 10 years ago and it only lasted a year. They talked about loosening it but I never went back to see the surgeon after he told me that. I just live with the problem and have found ways to deal with it. Be careful with the asthma and listen to the doctor. That is nothing to mess with. A lot of the members here that have GERD also have the asthma that goes along with it. If you have any questions just ask. Barb
My laundry list of diseases include, Ulcetive Colitis, GERD, chronic gastritis, Asthma, Alergies, CAD stent to LAD 1/4/05, TMJ and a deteriorating disk in lower back. Also chronic pain from a moped accident 11/9/07 which left me with back, hand, knee and foot problems and broken tailbone Jan/09.
Meds,calcium, lecithin, biotin, flax oil, magnesium, CoQ 10, vitamin C, zinc, Proair, Amytryptaline 15mg, Advair 500/50, albuterol nebulizer soluition, Ambian, pepcid, carafate, nexium, Zertec, Hydrocodone, cyclobenzedrine,


Proud grandma of Isabella Rose, Keegen Bryce, Caleb Owen and furry grandchildren Kayu, Sophie, Abby & Lucy


gerdedout
Regular Member


Date Joined Feb 2010
Total Posts : 39
   Posted 3/3/2010 7:42 PM (GMT -6)   
My7pinecones, WHO ARE YOUR SURGEONS??  I'm taking names of gifted surgereons...

my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 3/5/2010 3:41 PM (GMT -6)   
I am willing and happy to provide their names, but before I give "gifted" endorsement I would like to first have the surgery and then, when successful, I will "hail" them. I had my last test at the hospital yesterday. I chuckled as the radiologist, who had taken an extensive history, said to me at the conclusion, "wow, you sure regurg all over the place. We didn't learn anything new...just everything as you said was once again, confirmed." I think I have recently had 8 tests so far (maybe more :=} ) and all were what I had explained PRIOR to the test. One was different, but what I had told them, was confirmed in the test I had yesterday. A few weeks ago, I had a stomach emptying test. I explained that it was a moment in time; that much of the time food doesn't process quickly. I said that I can feel/taste, etc. (you all know what I mean :-{ ) That day, food passed reasonably well. However in yesterday's test my stomach and part of my esophagus contained a lot of food 15 hours after my last food consumption (it was a fasting test). I had only had a small amount of water and no water after 11 pm the night before. The test was at 10:30 am the next day.

I will report on my complex surgery (open) when I have it. I meet next Friday with my surgeons and WE will make our decisions and schedule the operation. I will also report on the surgeons after they have performed skillfully. I am a retired therapist, college professor/clinical director. Last week my surgeon said he was impressed with my attitude and the way I had dealt with so much difficulty over the many years. I explained that "attitude" was "my business". He laughed and confirmed that it makes a huge difference in coping and with recovery. Of course, I knew this to be true and agreed with him. He then asked if he could hire me to work with some of his patients who were so emotionally distressed. I thanked him for his regard but declined, of course.

I do know that learning how to keep the experiences we have in life in healthy perspective makes a huge difference in our emotional quality of life. Being able to do this can impact our quality of life, physically, as well, and visa versa. I explained to him that I didn't come into this world to be defined by it, but instead, to transcend it. This was a useful perspective I often taught my patients as they were learning to make important course corrections in their lives. We can't always determine the things that happen in our lives (illness, death of loved ones, childhood abuse, loss of employment, etc.) but we can, when we learn how, as adults, to determine how we will respond. Often there is trial and error as we learn.

Moral of the story: Be vigilant in establishing your own knowledge base, do our own homework and check the facts, edit as new information is discovered, be curious (not fearful), and follow "your gut" even it it doesn't work right HAHAHA and we will find ways to make positive change.

Post Edited (my7pinecones) : 3/5/2010 2:52:19 PM (GMT-7)


my7pinecones
Regular Member


Date Joined Feb 2010
Total Posts : 74
   Posted 3/12/2010 3:34 AM (GMT -6)   
Well, today is the day! I meet with my surgeons this afternoon. I hope we will be able to get things moving. I am confident that this 4th open surgery will go well. I'm more than ready to feel better!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/12/2010 3:45 PM (GMT -6)   
Good luck!

Joy
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