I met a doctor from Cleveland Clinic, OH

Hello all.

As most of you know I had thyroid cancer and a parathyroid adenoma and decided to have the bone in my tonsil bed checked out and it turned out to be Eagles.

Well, I went to a Thyroid Cancer Patient Education day in Orlando, Fl on Saturday to hear the latest updates on thyroid cancer, but I also had a separate reason. One of the doctors from Cleveland Clinic that I listed on my spreadsheet with the note that he mentioned Eagles in his bio was a speaker at the seminar. I wanted to meet him. I have not heard of any of our members ever seeing him for treatment and I felt like I would like to speak to this doctor who has Eagles listed in his bio.

I met him, he was very interested in making sure that his patients new what surgeons have to decide when they do thyroid surgery and what types of operations are necessary and what procedures are not really necessary. He and one other doctor went over the criteria we should use when choosing a surgeon. One was find out the doctor's experience, don't be afraid to ask about the doctor's experience. If the doctor is not willing to discuss your concerns, he said you should look for another doctor.

Once I felt empowered by his presentation. I approached him at break. I told him that I had Eagles and I had been researching doctors and that I saw his bio. I asked him how he felt about me putting him on our spreadsheet as I have done so. He was cool with it. I asked what type of surgery he does. He prefers external. Can I recommend him, no. I told him that maybe one day, I may be calling him for a consult, but for now I am trying to eliminate other possibilities for my ear pain. I had to laugh, he asked me if I have acid reflux which I do and he said that reflux can cause ear pain. He is right, when I have reflux that is not under control my ear pain flares, but it also flares at other times so I am still trying to eliminate the other possibilities before I run for another consult. He was very nice and seemed like he may be a good reference. Now for his Name: Dr Joseph Scharpf MD Cleveland Clinic Cleveland, OH. He is already on the spreadsheet but no one has actually had surgery with him. He is just a possibility for those of you in the area. Let me know if anyone ever consults with him. I would like to know if he is as nice as a doctor as he was at our conference. We had about 6 or 7 doctors and only 4 cancer patients. It was the first ever education day so they are hoping for more attendees in the future. Wish one day, someone would host an Eagles Education Day, but I will settle with cross referencing my thyroid cancer contacts with my Eagles contacts. They are both in the same field, but not so many of the docs know about Eagles.

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Thanks for sharing Emma. You are wonderfully proactive for this group!

Thanks for sharing that info! I also wanted you to know that Dr. Forrest decided to remain in Columbus Ohio at Wexner Hospital rather than moving to the Cleveland Clinic. His contact info remains the same. That is good news!

Thanks JKL, I have taken note for the next update.

Hello,

I am considering calling Dr. Scharpf's office for a consult. I am wondering if anyone has seen him since this post. Thanks for the info on him.

Emma, Christian22 and I went back through the posts when we recently updated the doctors list and as far as I know, no one on the forum has had a surgery by Dr. Scharpf. I heard at one time that anyone that goes to the Cleveland Clinic in Cleveland for Eagles gets sent to Dr. Brian Burkey, but I don't know if that's still true.

Thank you Emma, for thinking of all of us with ES and the 'networking' you've done as well as the doctors list! Would you mind if I mentioned his name, and that you found him helpful from the thyroid perspective on the Ben's Friend's Sjogrens site? There seems to be a link with that autoimmune disease and thyroid cancer/ problems, and people are often stuck for doctors on that site too. (There's no doctors list on that site, but I'm not up enough with the tech side to volunteer to do one!!)

Jules, yes you can recommend him but remember I have not had any professional experience with him. From speaking to him, he is patient oriented, who else would give time to a free seminar that was attended by only 4 patients.

Did u use Dr Burkey for surgery? What were results thanks

Who did you use for your surgery? Very interested in results and what Dr was able to help you

He turned me down. He referred me to another surgeon there who did my surgery. The surgeon that did my surgery is no longer at the Cleveland Clinic.

Why did Dr. Rukeyser turn you down and how long ago was this. What surgery did they perform. How are you doing now? Who was your surgeon?

Sorry , spell correct changed the name. I meant to say Dr Burkey.

I did not use him. I do not live anywhere close to there and at the time, I had other serious problems. It took me 4 or 5 more years to have surgery in the south where I live. I see that pthers have given you better information.

Thank you for feedback. So hard to find an expert on this rare condition.

I’m not sure why he turned me down. I think maybe my symptoms scared him. I had vascular eagles on that side. When the surgeon finally did my surgery he told me that the styloid has been compressing the carotid artery and the jugular vein. The surgery worked. I felt better right away and it’s stayed fixed. I can’t remember the name of the doctor. This was in 2012. I got a notice about 5 years ago stating the doctor was leaving CC and going back to Pakistan.

Wow, I’m glad it worked for you and you’re feeling fine. I won’t be going to Pakistan to find him. Your case sounds difficult. How long did it take to heal?

Sharon Eastman from my iPhone

heidemt
September 4

I’m not sure why he turned me down. I think maybe my symptoms scared him. I had vascular eagles on that side. When the surgeon finally did my surgery he told me that the styloid has been compressing the carotid artery and the jugular vein. The surgery worked. I felt better right away and it’s stayed fixed. I can’t remember the name of the doctor. This was in 2012. I got a notice about 5 years ago stating the doctor was leaving CC and going back to Pakistan.

The vascular part was healed right away. Dr cognetti once told me that often with eagles the effects are immediate. But I did have some nerve damage from that surgery that took about 8 months to heal.

I hear nerve damage is fairly common after surgery. At least you’re 100% now. I will remember Dr Cognrttis name in case I need consult.

Where is Dr Cognetti located. Do u Rene er his first name?