Living with dysphagia and a feeding tube, Dr Todd Levine

This was a session at The Myositis Association's 2017 Annual Patient Conference in San Diego. Many myositis patients find their swallowing muscles grow weak along with other muscles. Find out how to cope with this disturbing condition from a myositis specialist who treats dysphagia patients and also knows firsthand about the difficulties of dysphagia

[phyllislen]

I am here mainly because I have just lost my mom to this disorder. The constant need to try to get the stricture opened just did not work. It became such a burden to keep trying and believing in the doctors and having the same result. Which was the same issue could not be resolved. My mother was 91 years old. She did not have to be subjected to this many procedures. As lay people who were active in her care, we spent a lot of time trying to eliviate the issues with staffing at hospital, the general procsses of not seeing the surgeons perfoming the procedure. Helping chagen her, feed her even when foods did not go down, comforting her all day and night. Getting second hand information from a team of physicians thru the Hospitalist. Horrible. The possibility of a feeding tube was not addressed unitl she was tired, fearful of swallowing, and just wanting to give up. My mom was a strong person, she does not give up easily, and we let the docs know this. Being that age, her skin being so thim, and possiblilty of infections, etc arising she choose not to do this in the end. She made peace with her family and went into hospice. The overall picture was not clear and she was exhausted and suffered a weight loss of over 15 pound in 8 weeks. She charted her journey, and we carried out her wishes.  
Please pay attention to this discussion. Esophagel disorders are deadly, Most folks dont realize how much danger they are in until it really too late. Feeding tuebs cant correct this problem. You live with this.
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[soniasinghal]

U have any treatment beside dailation for upper esophageas blockage