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Asthma with Nutcracker Esophagus and GERD and LES

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Posted 12/5/2015 9:26 PM (GMT 0)
I have been suffering from uncontrollable asthma for two years. I cannot seem to get off of the high dose steroids. I was finally diagnosed with Nutcracker Esophagus with GERD and LES. The doctors at U of M say that the POEM procedure is not an option for me because it will cause complications with the LES. I am desperate for help. I have tried so many meds and Botox. Nothing is working. I am in need of any help you can give. I don't know where to go for help now.
Posted 12/7/2015 4:14 PM (GMT 0)
I am so sorry you are suffering. What is POEM procedure? Do you have a gastroenterologist? What does he/she say about your condition?

Do you have chest pain, as well? I was also diagnosed with 'Jackhammer' esophagus (see my earlier post on this forum).

What do the U of M doctors recommend for you?
Posted 12/8/2015 12:00 PM (GMT 0)
Hi Linda Sue,
Thank you for responding to my post. I see you are also from MI. Can I please ask where you went for treatment for your condition? I am looking to get another doctor opinion.

I was surprised to see that you had the wrap done while having a jackhammer esophagus. My doctors all told me that it could cause complications and advised against it.

The doctors at UofM were of no help. The thoracic surgeon walked in and said "I cant help you" I asked what he could offer me and he replied "Nothing". The St. Johns doctors and the U of M doctors cannot seem to agree on the right treatment. I just don't know who is right. I am in need of more Doctor opinions for treatment. I am thinking of going to the Cleveland Clinic.
Posted 12/8/2015 1:48 PM (GMT 0)
CynMac,
I had my surgery at Henry Ford Hospital. My surgeon was highly recommended, however, because of my on-going chest pain long after surgery, I consulted with a new gastro doctor who did an endoscopy and discovered that my 'wrap' is slightly twisted, and I might have to have my surgery re-done.

My surgeon should have had me get manometry before surgery, as I had my first manometry at UofM 5 months prior and the gastro doctor I had there never said a word about the results, which said that I met minimum requirements for jackhammer esophagus. I don't think the surgeon thought there would be a problem, but in retrospect, he should have been concerned about my chest pain MONTHS after surgery. So, I cannot recommend him for you.

Cleveland Clinic sounds like a good idea. I'm sorry I can't be of more help.
Posted 12/8/2015 2:04 PM (GMT 0)
CynMac,

Regarding your statement:

I was surprised to see that you had the wrap done while having a jackhammer esophagus. My doctors all told me that it could cause complications and advised against it.

I am interested to hear what complications can arise having surgery with this jackhammer esophagus condition.

If I knew THEN what I know NOW, I would have insisted on another manometry, or at least the surgeon asking to see the U of M manometry tracings. I have them on a disk but he never asked for it so I thought the paper report told him what he needed to know. I did provide copies of ALL my reports regarding my GERD from 2 different hospitals.

Thanks!
Posted 12/9/2015 11:02 AM (GMT 0)
Linda Sue

I am so sorry that you are having so many complications. I really feel for you. My doctor said that If I had the surgery without taking care of the esophagus first that it would make things with the esophagus so much worse. It sounds like that is what is happening to you.

I too suffer from intense chest pain. I recently had Botox injected into the esophagus. This has helped me greatly. My cough is gone and the chest pain is so much better. Unfortunately this is only a temporary fix. I am enjoying it while it lasts!!

I wish you luck in finding a solution to your problem. Thanks for chatting with me.
Posted 12/9/2015 3:26 PM (GMT 0)
CynMac,
I really appreciate your input. Do you know if there is any permanent 'fix' for Nutcracker Esophagus?

Currently, I am taking Cardizem 60mg, 4x daily, (to treat chest pain), and 50mg of Amitriptyline at night, (anti-depressant). It helps a lot as I also take 7.5mg Vicoden when I need it, usually twice during the day. I hate taking all this medication but without it, the pain is excruciating, as you know.

I've been doing some research on this condition and it doesn't sound too encouraging. So someone with this condition is NOT a candidate for LNF surgery? How is the Botox injected? How long does relief last?
Posted 12/14/2015 11:42 AM (GMT 0)
Linda Sue

Sorry it took so long to answer you. This crazy MI weather is really bothering my asthma.

There is a procedure called POEM that is used to fix the esophagus. This is where they go in and cut it. However, the dr at U of M said it would not work. The dr at St. John says it will. I do not know who to listen to. I am afraid to do anything until I get another opinion.

The Botox injection was done during Endoscopy. It was really easy. The botox can last anywhere from a month to 6 months. Everyone is different. So far it has made a difference in how I feel. My cough is gone and I am no longer choking on food or having severe chest pains. I would do the Botox again when it wears off. It is such an easy procedure and does help. Unfortunately this is not a permanent fix for the problem.
Posted 12/20/2015 8:28 PM (GMT 0)
CynMac,
I will try to avoid any further surgery if at all possible. If my new medications continue to give me the relief I've been searching for so long, I will continue to take them. Botox injection I will discuss with my doctor and see what she says.

I need to know a lot more about how to treat this condition and whether or not my esophagus can be 'retrained' to function normally.

Thanks so much for your input; I appreciate it!
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