I was scrolling through the most recent doctor list. I noticed that Dr Jason Newman is reported to be a neurologist. He is not a neurologist. He is a head and neck skull base surgeon. He is the surgeon who operated on Earmom’s son, who was about 11 or so when he got sick. Not only did he perform the removal of both styloids to the skull base, but since the young man was still growing, his styloids grew back and Dr Jason Newman went back in and removed them a second time. Last I contacted Earmom, she wrote a book about her son’s saga with Eagles and Lyme disease, and her son is older and doing well.
Her son was the first pediatric patient that Dr. Newman operated on and U of Penn was not set up for pediatrics. Luckily, her son was large enough for them to operate and NOW U of Penn has set up some pediatric guidelines. I am not sure if that is for Head and Neck Cancer Department or what. Her book was well written, detailed and her son was in so much pain before surgery.
I contacted Dr Newman myself because he was the only surgeon that I knew was prepared and willing to redo a surgery even his own. After I sent him a letter of introduction and my records he was willing to see me. I am so grateful to have found him because I was desparate. However, I was fortunate to find someone close to home just a month after that contact. I had been looking for years. Remember that we do have two very competent doctors in Philadelphia, Cognetti and Dr Newman. Two different hospitals that seem well equipped to handle Eagles.
Emma,
Thank you for the updated information and for the reminder about Earmom’s son & her book. We do tend to focus on the couple of doctors who’ve got a lot of ES surgical experience, but there are many other competent surgeons on the ES Doctors’ Lists who have done successful, healing surgeries. Your addition of Dr. Newman’s name to those closer to the East Coast is very helpful.
Here’s the link on Amazon if anyone is interested in reading it. There’s some great information & the tale of a diehard mom who left no stone unturned in the effort to get a diagnosis for her son’s varied & concerning symptoms. https://www.amazon.com/Connecting-Dots-Myoclonus-Glossopharyngeal-Neuralgia-ebook/dp/B073XSZ2G2/ref=sr_1_1?ie=UTF8&qid=1548971338&sr=8-1&keywords=connecting+the+dots+by+Sherri+Jonas
Thanks Isaiah_40_31.
If I can get back to it, I would like to find doctors in every state, at least one. That is why I really beg everyone to tell us about doctors who have helped them. Everyone who is on this site and will be on this site needs our input. This website is a totally new initiative that could not have happened before the internet and before Ben and Scott got together. We have all been helped by it and we can be part of a legacy or movement to link patients to the care they need and of course, be the support group.
We are so lucky to have found this and I for one want the world to know about this group, not just our forum but about Ben's Friends. We the recipients of this wonderful website can pass this forward by being supportive, passing on information and also spreading the word to all who have rare diseases and also, by helping to open up links to care that we would not otherwise find.Hi Emma -
Don’t know what happened to your post but it didn’t come all the way through.
Please skip NM. I tried and tried. No one here knew what to do.
Thank you for that input, sjlash! There are some states where an experienced ES surgeon is difficult to find.
Sorry my original post was lost, probably too wordy, anyway.
sjlash, I am sure that finding a doc in every state is unlikely, but something to strive for.