Hey all I went to Dr Hepworth for a second, well 3rd opinion, actually. Night and day difference from Dr Chan Levino. The PA showed me the scans and pointed out what she was seeing on them and it was so clear that I have bilateral jugular compression. She even pointed out two additional things; a large thyroid nodule and transverse sinus stenosis which is possibly compressing the brain. That will need additional tests. She answered questions and some issues were not eagles related which I am glad for help sorting out. I cannot recommend enough. I feel completely comfortable with the diagnosis. The flight was well worth it and actually pretty cheap. Finally making progress!
I’m so glad for what you learned from your appointment & that you now have confidence to move in a forward direction toward surgery & healing. I hope Dr. Hepworth is able to take care of ES & the sinus issue or refer you to someone great for that. Please keep us posted as to how things progress for you i.e. how your appt. w/ Dr. Hepworth himself goes, surgery date, etc.
Very pleased that you had such a positive & helpful appt., glad that some other issues have been noticed & hope that you can get those sorted too…hope that wait for the next step is not too long!
Dr. Hepworth and team are amazing! They have unearthed conditions that we have suspected for years, that other doctors missed. We cannot praise them enough. If you have to get on a waiting list, they are well worth it. We have only been seeing them for a year so far, but they have diagnosed so much. My daughter is awaiting her Eagle surgery sometime next year. However, they have already done sinus surgery, repaired her CSF leak, found her bilateral jugular impingement, and a PFO hole in her heart which is being repaired next month. It’s a lot of a teenager to go through, but explains why she has been suffering so badly for 7 years now. Dr. Hepworth and team are very compassionate and we feel so secure with their expertise!
Your poor daughter’s been through so much! So glad that you have a good team to help her & that hopefully she’s on the way to a good recovery…will pray the heart surgery goes well next month
Thank you so much to Jules and everyone here for all the support. It feels good to know we are not alone in this crazy struggle.