Well I just saw what "was supposed to be the Surgeon who has the most experience" in ES within our health provider network and I'M SUPER SUPER FRUSTRATED
I was diagnosed with ES about 2 weeks ago. At my appointment today the doctor walks in and proceeds to introduce himself as a Caner doctor, not an ENT, and that he is the most experienced doctor in the Kaiser network in the field of ES. He was able to feel the styloid when doing an examination.
I had real hopes that the horrible symptoms that I deal with may improve with surgery, then the doctor proceeds to tell me that the surgery is so risky due to the fact that the artery is so close that if it's nicked I will bleed out on the table. He is willing to do a vascular study to see if I have any impingement or vascular and if so then he would think that surgery may be worth the risk.
The doctor also told me that I wouldn't be able to find a doctor that specializes in ES or has more experience with ES in all Southern California. My hopes are shattered.
Does anyone have any suggestions for me? do you know of a doctor in the Southern California area that has more experience than the 5 ES cases that the cancer doctor had experience with?
I'm super frustrated, sad and quite pissed off. I hate Eagle Syndrome and Chiari Malformation.
Michelle, I'm sorry for what you've experienced. This is definitely the place to vent about your frustrations. Here is my suggestion for you. One of the most experienced Eagles doctors in the country is in California - Dr. Samji in San Jose. I know that's not southern California, but going to an experienced Eagles doctor is worth traveling for. Many of us have had to travel pretty far to get help. Give his office a call - they're experienced in dealing with people out of the area. His information is on the Doctors List found at the top of the page.
Thank you for your response. I'm frustrated and have been living in pain and on morphine, norco and amitriptyline for 9 years. We've been treating for the pain caused by CHiaari Malformation and when you get a diagnosis such as ES and know that some of the symptoms and pain can possible be relieved and then feel like the hope of seeing the surgeon for ES who doesn't know much about it was really deflating. My husband and I were discussing the possibility of Kaiser having an ES specialist at Kaiser Oregoon/Washington. Maybe they have a specialist up there. San Jose is much closer but not in or provider network. I'm willing to pay cash to get a 2nd opinion from a doctor who has a focus and experience with eagle syndrome. I can't find much information on the risks or surgery or the % of positive results post surgical. Any suggestions?
You could send you records to Dr Samji for review. That will at least tell you if he thinks he can help you or not, and if you need to plan a new strategy for finding care. He doesn't charge for the initial review, but does charge if you want to do a phone consultation to discuss his findings or need to come in for an evaluation. The website for Dr Samji does mention they have payment plans, and their are billing specialists who can discuss payment options with you. When I spoke with them, they said they were very experienced with out network/area patients. Dr Samji Billing FAQ I know it seems very daunting to seek specialist care or surgery out of network. Believe me, I'm broke as a joke myself. But you gotta get your life back. There are ways, and they can't be any more miserable than living in constant pain.
What a let-down that must have been. And to be dealing with this for 9 years - wow. But I think it's really smart that you are looking for someone with more experience.
I'm not aware of any doctors in Oregon or Washington that are considered very experienced with Eagles. There are two doctors on our list who I believe may have done surgery on a forum member (one in Oregon and one in Washington), but I don't know about any other experience they had with Eagles.
There are some other doctors in southern California that are supposed to have some experience with Eagles. Check out the doctors list. I don't know what insurance network any of them are in though.
If you go to someone who is considered a good surgeon, the risks are minimized. I think it's very important to go with someone who is experienced operating in that area, since the styloids are so close to nerves, veins, arteries, etc. People have had successful surgeries with doctors who haven't had that much Eagles experience, but were skilled experienced surgeons.
I've been reading on the forum for several years now and surgery is usually successful and people are very happy that they had the surgery done. There may not always be 100% improvement, but people still say they're better off after surgery than they were before. I've had several Eagles surgeries and have had improvements after each surgery.
I think it would be worth it to get an opinion from Dr. Samji. There was a recent discussion about getting an opinion from him. I'm pretty sure it was SnappleofDiscord that talked about it. If you can't find anyone in your network that is experienced with Eagles, will they let you go out of network to someone who is?