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What Fundoplication Should I Have?

Posted , 5 users are following.

DJ-RN
DJ-RN

After 15 years of being treated with GERD, and after 5 esophageal dilatations I was finally diagnosed with having Stage 3 Alchalasia. Spastic in nature. I've been an RN for two decades and had never even heard of this disease. Although I worked strictly Cardiology. It's been a hell of a ride to say the least. I've been aspirating in my sleep for over a decade and never thought that there was anything out there other than esophageal dilatations to help me. I just recently began to experience episodes of aspiration pneumonia some 4 months ago. Which on two occasions landed me in the ER. My fever was 103.4, SOB, PS02 in the 80's, severe chills and disorientation. That's when I first heard the term Alchalasia. I don't see how I could have been misdiagnosed all of these years. I'm concerned that all the aspirating has done damage to my pulmonary system. I plan on following up with that after I handle this problem.

I've had an endoscopy, two barium swallows and a manometry within the last month and it showed I had type 3 spastic Alchalasia.

I was referred to one surgeon and he tried to schedule a Dor Fundoplication with a Heller Myotomy before I had even been scoped or had the manometry. I never followed up with him again. What I'm having a difficult time with is making certain that I have the right Fundoplication done. I don't want to have one that the surgeon just happens to perform the best, I want one that will benefit me the most. The two types of fundoplication most commonly performed on the espohagus are the Nissen and the Toupet. Even though there are other types as well. I'm not even certain that I'm going to have the Fundoplication at all at this point. I may just have the Myotomy and hope that I get some relief. But I know there's a chance of developing GERD with that alone. And, I'm still subject to aspirating. But, I've been sleeping with the head of my bed elevated and propped up on pillows every night. This has caused me not to aspirate within the past ten days.

Can any of you give me some advice as what I should have and why? I'm somewhat reluctant to have a serious anatomical change done in my digestive system. Plus, I'm somewhat afraid that I may be sorry if I have these surgeries. Anything that you may can enlighten me on would be greatly appreciated. Also, what do you drink to help your pills/medication to pass through the LES? Mine is very hypertensive and stays shut for the most. I can tell that my pain medication that I have to take for a chronic condition aren't being absorbed the way they should be. Again, my LES is greatly compromised.

Thank you.

DWJRN

0 likes, 6 replies

6 Replies

  • kevin78403
    kevin78403 DJ-RN

    Posted

    Hi, I chose the Toupet because my surgeon had more experience with this procedure. Given that the patient satisfaction and failure rate is similar between the two, I think that surgen experience is the most important factor. If the Toupet is done incorrectly, acid reflux is common. If the Nissen is done incorrectly, LES pressure may be too high and you may experience symptoms similar to achalasia (i.e. trouble swallowing). Dor is generally inferior to both I believe, and carries a higher risk of acid reflux. If you don't chose any fundoplication, I believe that the risk of severe acid reflux is greater than compared to the Dor, Toupet, or Nissen. 

    • DJ-RN
      DJ-RN kevin78403

      Posted

      Thanks for your reply. I'm having Botox injections in the LES Monday to buy me 6 to 8 months before I undergo my surgery. I've met with two, and both feel that I need a Heller Myotomy with a Dor/Partial Fundoplication. I have stage 3 spastic Alchalasia with severe aspiration. I feel I'm on the right track now. My surgeon will be using Robotics with Laprodcopic.

    • Robert13450
      Robert13450 kevin78403

      Posted

        Hi Kevin, I believe you have hit the nail on the head. I am also having the Toupet Fundoplication actually on September 14th in about a week and I feel the same way. If your surgeon has done mostly one surgery and had terrific success why gamble? The Nissen is too risky for my taste at least the Toupet leaves some room for foodvto get by. 

               Did you have yours already sndbif so how are you feeling? I hope everything went well 

            Bob

  • DJ-RN
    DJ-RN

    Posted

    I would really like those of you who are suffering with Alchalasia and who have stories to tell to tell them here on my site. Let's all discuss the different roads we've been down, tests, procedures, surgeries and let's help each other cope in dealing with this rare disease that only effects 1 to 2 per 100,000 annually. Let's exchange notes and come together as one. I would like to hear more about diets and what you have found works best for you. This disease seems to have a mind of its own and effects everyone differently.

    • emusedone
      emusedone DJ-RN

      Posted

      I agree with you. I found this site and these stories out of desperation from suffering from Achalasia and all the testing, re-testing, Specialists not agreeing with their colleagues, as if I’m on exhibit and people in white coats, arms crossed all discussing “well she’s quite thin” “yes maybe she’s making herself throw up” “well we do have all these endoscopic tests showing her esophagus is closing off” “yes but she’s not showing signs of heartburn” “true but maybe she’s just not feeling the heartburn””no I think you’re all wrong, I think she’s got repressed childhood trauma and it has manifested itself in suddenly causing her esophagus to not allow food through”

      Ughhhhh!! Help me!!!

      By reading the stories on here, I feel like I have a place to go where people understand how difficult this illness, condition is and how frustrating it is getting help and figuring out which treatment is the best treatment for me. Since each case seems to present itself differently in different sufferers. Thank you EVERYONE for sharing your experiences. It truly is helpful. 

  • Madison95
    Madison95 DJ-RN

    Posted

    I have type 1, and my LES, like yours would stay tightly shut a majority of the time. I aspirated almost every night; even when I didn’t eat or drink anything hours before I laid down. 3 weeks ago I had a laparoscopic Heller with a Toupet and I’ve noticed SUCH a difference. I was already on board with a wrap because I have GERD, but  like most of y’all I asked my surgeon why he was going with the Toupet rather than the Nissan or Dor. His answer was succinct: “The Toupet acts as a pseudo LES. A Nissan would be too tight, and a Dor would give you worse GERD.”  I haven’t aspirated since surgery, even when I drink right before bed, and I haven’t had any heartburn or reflux (granted I haven’t been eating any greasy, spicy, or acidic food thanks to the post surgery diet). I only feel pain when I eat too much, which is like 8 ounces of food or beverage thanks to my decreased stomach size post wrap! But things go down easier and stay down. I see the advantages of the Toupet wrap, and if you have a history (or even if you want to prevent it since I think I read that there’s a 30% chance of getting it afterwards) of GERD I highly recommend it. 
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