Hi there, I have been dealing with this issue since I was pregnant with my son who is now 3 going on 4. I complained of tenderness in my glands and she said oh it's just your hormones it will go away once you have the baby....it didn't, then I went in when he was 1 year old and they ran tests and said oh we think it's your glands and you have salivary stones...massage the area, hot compress and suck on lemon drops or sour candy...didn't help, it got worse pain and swelling wise because I was constantly messing with it...a year after that I went in and they did a CT with dye...low and behold he says you have elongation of the styhloid process with calcification of the hyloid ligament...WTF?? Otherwise known as Eagle Syndrome but you should be fine and if it's really bothering you we can find a surgeon who can help you although it is rare...and he said although he was a specialist he wasn't familiar with the surgery and wasn't interested in me being his guinea pig...GREAT!! So they have no idea what they are doing...I told him I did research and there was a surgeon in San Jose but he said that they had to find someone within Kaiser first and if no one could do it then they would refer it for Kaiser to pay outside of the network...that was seriously oh a year ago now..I sent a message AGAIN and they said "oh I never heard back from the surgeon I contacted let me reach out again and see if I can find someone" ...this does NOT give me confidence or peace of mind..Does anyone else have Kaiser, had surgery with Kaiser? I have constant swelling and Pain and now dull ringing and hearing loss, and I have to take a Norco at night just to get some sleep...I refuse to take them during the day because I have kids and I have a job I need to be able to perform but this isn't good and I am desperate...
Hi Sara, I’m sorry to hear about your suffering. I started having paralyzingly headaches in dec 2012. I have Kaiser, and they said “sinuses”, and treated me with a slew of different antibiotics. When nothing worked they did X-ray and saw “nothing out of the ordinary”. The pain radiated in my jaw so I decided to see an oral surgeon who dx the eagle syndrome. :(. I went back to Kaiser armed with my diagnosis to argue their “addicted to Advil”, theory that I was suffering "rebound headaches only. They decided to do ct and confirmed that dx. Like you, my head and neck dr. Said “not comfortable”, doing the surgery and refered to me Dr. Shubuya , ANAHEIM HEAD NECK SURGERY, stating he was the best of the best at cancer tumor removal. Upon consultation, he stated he didn’t believe in “eagles”, and although he would be happy to do the surgery, he recommended a psychologist. Lol! He has done the surgery “4 other times”, and all “still complained of pain”, Out of sheer desperation I opted to have the surgery. In April, 2013 I had extraoral surgery on both sides. I woke up and had no movement of my toungue and had to be placed on a feeding tube due to my inability to swallow. Apparently my hypoglossal nerve was hyperextended and I was told in 20+ years that has never happened to him during surgery. I took speech therapy, and just prayed to regain mobility of my toungue. Luckily, I did one year later. I still have all the symptoms I had before, and just try and deal with them through excersise, prayer, and meditation. Kaiser wanted to send me away with norco, but I decided that I would end up suffering more Painful headaches without it, so I had to quit that! Make sure and do your research! Ask the doctors and surgeons questions! They don’t make it easy at kaiser!! I feel like you need to tell them what to do, as oppose to them giving you any guidance or direction. I really don’t mean to scare you, I just wanted to arm you with information regarding the search for a good surgeon. AFTER everything, Dr. shibuya stated, after the removal of my styloids that were lined up “like a picket fence”, on each side, he believes this did cause my crushing headaches. So at least he will be more sensitive to the next eagle sufferer. I think I’m still in pain due to nerve damage. Good luck and pray your journey is smoother
Hi Sara. My name is Royce. I have Kaiser in Roseville. Long story short I met with a Dr Charles Stewart in Sacramento. He is a head and neck cancer specialist. I was referred to him when my ent couldn’t give me answers to my problem. I basically would feel something when I would turn my head and swallow. I had just had my tonsils out last year because of tonsil stones I kept getting on the right side. I was also having periodic pain behind the ear and the neck. Ultimately after having the flu I noticed pain in my throat specific to that same side. I felt inside my throat where my tonsils used to be and felt a hard lump. Anyhow Dr Stewart ordered a ct scan but told me he believed it was eagle syndrome. He is very familiar with it. Dr Stewart confirmed it and he showed me how the tendon has grown longer than normal and said they can calcify and that’s the hardness I was feeling in my throat. He said it is harmless but he can remove it either through the throat or neck. He has done the surgeries. He said its really up to me, and if it bothers me enough to do the surgery. Knowing what it is now and not really having any issues I opted to not do the surgery. Dr Stewart was excellent! He is in Sacramento on Morse ave. Hope this helps. Kaiser has been great and I have had a lot of rare health issues fortunately nothing too serious. Any questions let me know.