S.O.S. please looking for a Dr that deals with Eagle's Syndrome. ( growth/elongation of styloids that then impinge on neck structures like nerves and blood vessels)
Im in central NJ and can get to Philly area, possibly other areas in PA, NYC, and NJ.( medically fragile so travel is limited)
apparently my heart monitor showed that I now have intermittent 2nd degree AV blocks, BUT correllated with when I flex ( look down) and/or down and to right. ( it also often happens looking down to left but not as severe) this means I get pauses--heart stoppages. It also puts strain on my autonomic system, already bad. And my heart as well. they think my styloids ( proven 30-35 mm via 3D ct scan, norm is under 10 mm and my neck is very small, too) are not only pressing my jugular ( proven during ICP monitoring in Dec) BUT now also pressing or irritating my carotid sinus, hence the *intermittent* and position dependent blocks.Carotid sinus pressure can cause temporary AV circuit interruptions.
I have been to Thom Jeff ( Dr Cognetti) who knows zip re autonomic issues and so would be too dangerous a surgeon for my safety. He agreed. I respect his admission and him not taking me on.
Also Dr Costantino at Lenox Hill Hospital who sent me to REKATE for that brain surgery. (ICP). Rekate promised that while in ICU theyd also sched Costantino to come in and do styloid(s)--never happened. apparently wasnt even an option UGH. anyways while I have confidence in Costantino he isnt in network and Im never going to pay off the Northshore brain surgery bill of > 10K left after insurance and affordability discounts, at least not in my lifetime.
I also just got off phone with Dr Cohen, Morristown--I was told he did Eagles and as a bonus my parathyroid issues. well he just got back to me and says he doesnt do Eagles. Dr Norman in florida is one expert and his staff saved my life by telling my PCP to stop the D...and as expected the Calcium dropped. But my PTH levels still bad. wish I was well enough to get there, to Fla)
PLEASE help me find an Eagle's doc ( usually ENT and/or head and neck surgeon). Ill wait on the PTH since that aint killing me.yet.[ Im still searching for replacement mold /consumer fraud atty, consults for my spinal and brain surgeries Ill need sooner than later and a bunch O'other stuff. So, thank you very much! ( Ive posted this to other groups so forgive the info re Eagles that Im sure you all know)
due to my poor health and inability to monitor many sites, info emailed will reach me easier and faster. thanks again!!
I live in Phoenix AZ. I tried for over a year to find a doctor in network with my insurance co. And they don't permit me to go out of network. It was so hard to find a surgeon who did the surgery. Now I have 2 in network. But years ago I didn't know the second surgeon existed and my insurance company was in capable of helping me find a doctor that treated this condition. They gave me a list of ENTs that didn't treat ES. I really wanted a second opinion from a doctor at the Mayo Clinic. Then I discovered that my insurance company has to help me find at least 2 doctors in network for unusual conditions. If they cannot do that, they have to let me go out of network to get 2 opinons and pay for them. If I chose one to do the surgery then the insurance will pay for the out of network physician. I think after looking back at my struggle it would have been easier if I had found some kind of insurance advocate to help speak for me and stick up for me. Didn't hear about that till later. I did eventually find a doctor in network. Plus my ins sent me to the Mayo and paid for a second opinion. So it was true! I can't tell you how many clerks told me I couldn't do this. Once I knew it was there responsibility to help find at least 2 doctors to treat me I didn't let up. Just thought to write and give another take on what goes on with insurance. My heart goes out to you. I hope you find a good surgeon.
good luck to you. I have heard about Bradley simmons on this site. I do not understand all your health issues but when you get the Eagles figured out, you might contact Dr William Bradford Carter in Baltimore, Md for the parathyroid. You might find someone closer who can do parathyroid, but they have to understand the whole balance of calcium and PTH,. For adults do not live in the 10's, they live in the 9's calcium wise. Children and teenagers have calcium in the 10's per Dr. Norman. I had Eagles, a parathyroid tumor and thyroid cancer all at the same time. I am doing better thank you, but I have no answers for you for your heart and other issues. Hope Dr Simmons can help you.There is another skull base doctor, but I think he is in the PA area. I will check and get back to you. He might be able to do both Eagles and parathyroid. I have to look him up.
THANK YOu and yes if you have the time, the PA doc would be wonderful Im so glad youre doing better. were they able to address the neck stuff all at once? or serial surgeries? I wish I was on a TV medical show where they can fix a lot in one OR stint...because each time they do a procedure it raises the risks for the next one, and also sets me way back, oh well.
emma said:
good luck to you. I have heard about Bradley simmons on this site. I do not understand all your health issues but when you get the Eagles figured out, you might contact Dr William Bradford Carter in Baltimore, Md for the parathyroid. You might find someone closer who can do parathyroid, but they have to understand the whole balance of calcium and PTH,. For adults do not live in the 10's, they live in the 9's calcium wise. Children and teenagers have calcium in the 10's per Dr. Norman. I had Eagles, a parathyroid tumor and thyroid cancer all at the same time. I am doing better thank you, but I have no answers for you for your heart and other issues. Hope Dr Simmons can help you.There is another skull base doctor, but I think he is in the PA area. I will check and get back to you. He might be able to do both Eagles and parathyroid. I have to look him up.
Teri thank you so much for taking time to reply so soon after surgery!! I hear many here and elsewhere talk about pain..also in my chiari groups etc.. and heres the mixed blessing...my pain is tolerable and some days hardly at all--for any of my many conditions. BUT Id gladly trade that for the other life threatening symptoms like my heart stopping.
Pain meds exist...nothing to help my symptoms other than surgery...and even then we dont know.. I hope your recovery continues to be positive
Teri Jackson said:
I went to Emory university medical hospital and de dr Delgadio and my ligaments on both sides were calcified and we also touching my voice box. He said mine were the worst he had seen. He said they were narly and had calcifications all over! I am 3 days post op and finally notin excruciating pain! I recommend him highly!
You may also want to look in New York since there are so many head and neck surgical groups there. You can try the Head and Neck Surgical Group in Manhattan. Call the main office and ask them to direct you to the appropriate skull based surgeon based on your needs. There are many others in NY as well although I do NOT know specifically of any NY doctors who handle Eagles and your other needs.
I think that you might be able to use Dr.Cognetti for your Eagles and your parathyroid. Not sure, but I think you could get more than one issue done with him. He is in Philadelphia and on the doctors list that Christian22 posted. Good luck.
Check him out, he is closer than Norman in Florida and I am almost positive he has a better bedside manner and is closer. I live near Norman and he is absolutely a great parathyroid doctor, but there are others. I did not go to him because I had thyroid cancer along with a parathyroid tumor. I was in Florida and chose a cancer center. Then 2 years later I had the Eagles taken care of. I think you might have a win win if you try Dr. Cognetti.
You might be able to get both situations handled at one time. You are the second person tonight that I have seen that has high calcium and PTH and Eagles. I also had the same.
For the record, we had a similar experience with Cognetti and my son couldn't eat or drink the entire next day after his oral exam. It was horrible beyond words.
Fin24, you've obviously been through a lot, and we can understand that you feel that if you'd known ahead then things could've been different for you surgery wise and financially. I know I'd be hopping mad in your position. And we appreciate that choosing doctors is difficult, it's just that this part of the site can be publicly accessed, so for legal reasons we have to be careful about what's posted. There's some guidance in the site etiquette section. You can get in touch with other members through personal messages if you want to discuss things. I really hope that you can get support on here, and get the right help for you.
I owe you an apology, I was on the site late last night. I totally missed that you had been to Thomas Jefferson, so my suggestion was inappropriate for your situation. I do hope you get someone who can help you soon. and perhaps someone who can help you with your parathyroid problems as well. I will be praying for you to get help soon.