Hello all, I’ve been here a while but have never posted. I have bilateral eagles syndrome, both sides are over 4 cm. Since diagnoses (2022) I’ve done fairly well with amitriptylin and cyclobenzaprine. Symptoms have been tinnitus, globus feeling in neck when swallowing, stiff neck and headaches. As of late the symptoms are progressing and becoming more severe. Problem I am running into is there is no doctors in my state (Oklahoma) that do the surgerys. My insurance will not cover any out of state or out of network visits. I inquired about a doctor I found in California from a list on this forum. Called and they want 40k per surgery, so obviously 80k plus trip and stays. Also they would need it up front. There is no way I could pay that out of pocket. So my question is, has anyone faced the same obstacle and is there any options for this situation? Thank you in advance.
@DUnreal - We’ve had a number of members who’ve had the same situation you’re in w/ insurance that won’t pay for out of state doctors’ visits/surgeries. Some insurance companies employ a patient advocate who will go to bat for you w/ the insurance company. If yours doesn’t have someone like that, then there are patient advocates who work independently & can help you appeal the need for specialized surgery since there are no doctors in your state who are capable of doing the surgery you need.
Another option is to contact your insurance company & ask what their appeals process is then do what they request. This doesn’t always provide a positive result. We had one member who threatened to file a complaint w/ the medical insurance board in his state if his insurance didn’t approve his out of state ES surgery. He got the approval he needed after he proposed that to them as his next step.
Here are 3 cases to help you get started.
@DUnreal Check with your insurance to see if they have something called “access to care” (maybe they use a different term) which is essentially a process for getting coverage outside of your network when there is no one in your network with the expertise to do the surgery. It’s a form that the surgeon you choose fills out and then your insurance reviews it. Blue Shield of CA denied me access to care for quite a long time and I went through many appeals and had to get the CA Department of Managed Healthcare involved (they regulate insurance in my state) but ultimately I won and they were actually fined by the state of CA for their actions. Best of luck.
There are a couple of doctors on our list in Oklahoma, in case you’ve not tried them:
Dr Greg Krempl, Stephenson Cancer Centre/ OU Physicians Otorhinlaryngology Clinic, Oaklahoma City 405- 271- 7559 (otolaryngologist) Does external ES surgery & will do bilateral surgery if patient desires, https://stephensoncancercenter.org/Patients/Clinics-Services/Head-and-Neck-Cancers/Treatment-Team/greg-krempl-md
Dr. Brian Snell, Neurosurgeon - Oklahoma City, OK, (405) 748-3300 https://www.briansnellmd.com (Has recently started doing ES surgeries - 8/24)
As far as we know it’s up to date info, if they’re no longer doing ES surgeries then hopefully someone will let us know… other members have seen head and neck cancer surgeons or head and neck neurovascular surgeons as they operate in the styloid area & sometimes have to remove the styloids to access the area, so if the insurance is a big problem then maybe have a look in your area?
Just seen your post on another thread about the OK doctors- have edited the list, & added another one who did one member’s surgery @Hadassa had surgery with Dr. J Runkle in Norman.
Unfortunately, Dr. Runkle is deceased.
Oh no, thanks for that @Isaiah_40_31 .
@DUnreal , we have another new member from Oklahoma, @MarcinOklahoma , he has an appointment with Dr Krempl for ES in December?!
This is great! Thank you so much. I will go down this avenue and see what comes out of it! Sorry it took so long to get back with you. Very much appreciated!
Wow, thank you for this! Great information that I will definitely check into! Very much appreciated!
I was diagnosed in September by my neurosurgeon, Dr. Nasr. After a few wild goose chases, U found Dr. Krempl with OU- he is performing my surgery in 3 weeks. I was also diagnosed with bilateral. He is removing my right styloid first- and said if needed, he would remove the left. Which is actually longer, but mild symptoms.
Thank you for the information about Dr. Krempl doing your surgery, @MarcinOklahoma. I’m glad your wild goose chases led you to him. We recently had a member who was told he’s no longer doing ES surgeries so it’s good to know that was misinformation.
If you don’t mind sharing your surgery date, I’d be happy to pray for you & Dr. Krempl on the day of your surgery.