I am new here and really need some help/information. I remember seeing that some people had posted about this procedure and would appreciate any information anyone can give. I live in Georgia. I have had a retrograde dilation done by an ENT and a GI doctor in Augusta, Georgia, four hours from my home, and it was successful, after a series of subsequent dilations by my GI, although I was still totally PEG dependent because my muscles were atrophied and because I became almost literally paralyzed with fear of choking. After months of speech therapy in which I was making small progress, in the past two weeks I noticed that I was aspirating a lot more so I scheduled another dilation. The gi doctor was unable to do anything because my esophagus was completely closed again, and he basically blamed me for putting it off for so long. The last dilation I had he told me to return as needed. No one would ever tell me when exactly I needed to return and because of my muscle atrophy, HOW WAS I SUPPOSED TO KNOW if it was the muscles not functioning correctly or if my throat was closed again?
I have a follow up appointment on Monday with my ENT, but if he proposes the same treatment, I do not want to do it there.
I remember seeing a posting by a member named Melanie that her husband had great success with the doctor who perfected the TREAD procedure at Wake Forest. Could anyone please share any information they have? I am a 32 year old mother of a two year old daughter. I am willing to travel if I can find something that will work and I am desperate to get off this PEG tube. Please help me! Thanks in advance for any information.

Hello Bethne

Hope you find these pasts posts related to the TREAD (Transgastric Retrograde Esophagoscopy w/ Anterograde Dilatation) procedure helpful. See also: info through Google.

Best wishes
Vinod