Soft Palate involvement.
In 2008 I had finish some fried rice,and could feel something in my nose.Much to my surprise it was a little of the fried rice.Looking into the mirror I could see a pin hole in my soft palate,and a good portion of the area was inflamed.The next day I saw my ENT doctor between O.R. cases,and she confirmed the tiny hole,but was reluctant to do a biopsy of the area.She was concerned that it would only create a larger hole.That evening I was seen by Speech and Swallowing.I was taken to radiology and giving some pudding to eat while some type of radiology was used to capture the fistula in my soft palate.After careful consideration Pulmonary and ENT strongly believed it was GPA again,and never wavered from this belief.Rheumatology was not so sure.My Rheumatologist ordered ENT to biopsy the area on more than a few occasions,but ENT refused to do so because of the fragility of the area.By the time I was treated with six months of IV Cytoxan there was little left of the soft palate.I was then placed on Cellcept as a maintenance drug.ENT was charged with keeping an eye on the area.Taking photos for the record.A new ENT took over the case,but dropped the ball on realising tissue was decaying in the Pharynx area.I saw him last August and complained about it.Falling on deft ears.In September my dentist without any words from me was alarmed at the change in the pharynx ,and ordered me back to ENT.ENT still showed little concern,and told me to come back in a month.Well,I did not go back until yesterday.I had a hand written statement describing what had happened to my soft palate in 2008,and how it was treated.The letter also stated I wanted a definitive diagnosis on the continued tissue lose in the area.When I checked in at ENT I had this statement recorded on my permanent records for all to see.Yes,this got his attention.That and I had my girlfriend the O.R.nurse with me.He now believes the GPA is active,and is causing this disturbing damage.A CT Scan has been ordered for this Friday,and he will come up with a game plan thereafter.I do still have my hard palate.Thank goodness.
Last edited by Titus3:2; 05-30-2016 at 09:33 PM.
"You can tame anything,except the human tongue"
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