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I am a 54 year old white female who was diagnosed with Scleroderma (Crest) about 12 years ago. I have taken all of the medications for acid reflux (GERD) for many years, I am presently taking Protonix and have also had a 24 PH Prove & esophageal manometry. I was sent to a surgeon for possible Laparoscopic Surgery, since I am not responding to medication and the test showed that I was a good candidate for this procedure. The surgeon informed me that I was a good candidate for this, but because I have scleroderma, he would not be able to correct my problem with surgery (that the bottom of my esophagus had lost a lot of mobility due to the scleroderma).
He also informed me that he really did not know what could be done for me. This is a teaching hospital that I went to and he said that he was going to put my case before other doctors and specialists to try and determine what to do for me. I am very concerned about the fact that this GERD cannot be corrected and what will be ahead of me in the next few years (without some other treatment because of the scleroderma).
Please try and help me find some answers.
You may well have a very complex health situation, which is being evaluated in a delicate (and perhaps ideal) manner at this point.
Here is why: Group presentations in teaching hospitals often involve what is referred to as Grand Rounds. In this setting, the overall features of a particular case are discussed and the intricacies as they relate to a particular issue are tackled. Your surgeon seems to have recognized the peculiar character of your case and taken the initiative to present it in an intense evaluation setting. I would encourage you to seek the advice of this surgeon after your case is presented to the other doctors and specialists.
Furthermore, if you are so inclined, it could be to your benefit to be present at the conference in person, so that the variety of doctors there could ask you details of your health situation. This is frequently done in many (not all) grand rounds conferences. Usually, you would eventually be asked to leave the room after which a medical discussion about your condition takes place. You might ask your doctor now to volunteer for this if he/she feels it appropriate. This can be very informative for you and eye opening as to how much doctors really do understand about your health issues.