Last week after 3 years of pain and no answers I finally found out that I have a broken styloid process which is servered at the base of my skull and there is a tiny part (like a sliver) or bone or cartilege that tried to heal but it clearly was unsucessful at fully reattaching itself looking at the images the doctor at Georgetown University showed my. My styloid process looks like a deer antler if you can imagine maybe one quarter to a third is kinda attached to the base of the skull another third in this big divet then the rest is like a horn moving back up to the base of my skull but its not attached it looks pretty narly.
Besides that. My main question is that my earliest appointment to Dr. Hackman is scheduled for April 9th 2024 thats just my first meeting consultation appointment, and idk if the next they will schedule surgery to remove it or what. But im in a race against time. Im 25 and when i turn 26 i lose my insurance and im getting mixed information my mothers retirement speacilist at her work says I will remain on the insuramce policy till the end of the year, but anthem blue cross blue sheild said i lose insurance at the end of the month i turn 26, so i guess my question is how long does it usually take to schedule the surgery appointment?
My next question is that if i lose my insurance and if im lucky and get medicaid cause im low income can i still see doctor Hackman with medicaid?
Or lets say if i lose my insurance and i cant receive medicaid; does my condition qualify me to get disability so then i can qualify for medicaid?
Thank you all again for helping me. Im just super scared frustrated and heartboken with this sitiuation cause ive come so close too; with bascially no help in my personal life here, with my family never caring and thinking i was just playing an act while ive been in so much pain i dont even know how i managed to survive this long with practically zero emotional support without ending my own life; to finally finding my issue last week just to possibly have my oppurtunity to finally obtain relief ripped away from me because i will no longer have insurance. Again ill appreciate and help or insight or support or ideas in case worse comes to worse and i lose my insurance and cant get medicade. Again thank you all again
First off, I’m really sorry you’ve had to go this journey alone. I’m very thankful you were finally diagnosed & have seen the nasty styloid that’s been causing your pain & suffering. Did getting evidence like that help convince your family you weren’t faking your pain? I certainly hope so!! I applaud the doctor you saw at Georgetown U!!! Can you share his/her name?
Your styloid sounds spectacular. I’d love to see a picture of it if you can post one.
By chance, did you ask to be put on Dr. Hackman’s cancellation list? If not, call back tomorrow & explain your insurance situation & ask if there’s any way to be seen sooner. If not, ask to be put on his cancellation list. We’ve had several members recently whose appointments or surgery dates were moved up considerably by being on his cancellation list. You can also ask how far after a consult surgery is usually scheduled. While you’re at it, ask if he sees Medicaid patients. If you can’t work due to your high pain level, then I believe your condition would qualify you for Medicaid, but I truly know nothing about that system so I could be wrong.
I mean with the family sitiuation I dont even know how to voice my frustration cause I feel so empty and defeated my how unsympathetic theyve been all this time. They di know now that im not lying but they still choose to be unsupportive and uncaring. Other than my mom she is glad that I found the cause, but i mean for so long they all been in denial that im just shattered and angry at them all.
As for the doctor its at Goergetown U - Medstar - Dr. JONATHAN GIURINTANO he is such an awesome guy and super caring and pays attention to detail. Im sure if other members go to him with problems similar or outside of eagle syndrome there is a high probability i believe he will find the cause. I mean thats my opinion cause ive seen 7 other ENTs and a neurologist over the past 3 years and he’s the only one who looked studied my scans and showed me. Ill try to get the images if possible I have a disk but i dont have any way to extract it.
Ill call Dr. Hackmans office to see if i am in fact on the list. I asked to be on it but im not sure if in fact i am.
I mean as for medicaid or if i lose my insurance before the surgery do i qualify for disability with my condition so i can receive medicaid? If so who can i reach out to or talk to im so lost on this topic cause i dont even know where to start to even apply or maybe find someone that is caring to do a consultation with.
Sorry to hear about all of this! Really sounds difficult and particularly with no support from your friends and family. Please do reach out to all the friendly people here.
If you have any scans I am more than happy to help you turn them into a 3D image and post them on the forum if this is something you want to do. There have been a lot of useful discussions on length, shape, discontinuous ossification, but dont feel like you have to share your scans if you dont want to
Also i notice you talk about neck crunching etc, i also have a lot of severe crepitus and may also have a broken styloid, or at least partially ossified. Am curious if there is a connection!
So sorry that you’ve been in pain for a long time and no support. I’m UK and don’t know about the US insurance system, hopefully someone will be able to help you with that. In the UK we have organisations called Citizens Advice Bureau and the Disability Advice Service who help people apply for disability payments, are there any non-profits organisations in the US who could help?
Thank you for sharing Dr. G’s name. I’ll add him to our Doctors List as someone who can diagnose ES but doesn’t do the surgery for it. He will still be a significant resource for our members.
Regarding Medicaid, I think you’d need to call the Social Security Administration to ask about how to get that type of coverage. Expect to be on hold for a LONG time. If you have a Social Security Admin office near you, you can go there for an in person appt. You may need to make an appointment online first though.
One other suggestion for getting a quicker appt w/ Dr. Hackman which one member mentioned to us - call the office several times a week to check for cancellations. She did this & a cancellation had occurred just before one of her calls. The person she spoke to offered the cancelled appt. to her on the spot. Maybe she was just fortunate, or they were tired of hearing from her. I guess it doesn’t really matter. The point is she got in to see Dr. H much sooner than expected.
Hi there! 27 and can relate to a lot of the emotions you are feeling. My appointment date with Hackman is also April 9th. I hope you get some help soon.
@Cdbruce & @etherealcataclysms - Maybe you two can meet up if your appts w/ Dr. Hackman are somewhat close together. There’s nothing like face to face support when it comes to ES!!
Hello, I was luckily able to see Dr. Hackman early. I called in and they gave me a appointment that i had today. Maybe if you call in each week one will pop up.
I’m so sorry you’ve been dealing with this alone. I hope now that your family can see the seriousness of the diagnosis, you’re getting a little more support. I can relate to feeling sick with people not believing you, and while my husband was supportive, I know it wore on him for me to be in pain and sick and go years without a diagnosis and doctors continually telling me I was sensitive or had mental health issues. I think the medical gaslighting a lot of us have dealt with along the way is enough. I hope you’re able to get some support from your family now that you have a very concrete answer.
I second the cancellation list. Marsella has been really great about calling me whenever something opens up. I don’t know if you’re local to Dr. Hackman, but when you’re on the waitlist, be ready to go next week if they call you. I was really bummed I wasn’t able to get a babysitter in time when they called me to get in for my surgery sooner. But it makes me feel confident that you may get a call sooner, especially with your situation.
Thank you for the support and reassurance knowing im not alone. Have you had your surgery already? If so how was the recovery process and how are you feeling now. Do you live in the area of Dr. Hackman and are there pain management centers he has reffered you to or you have found yourself or PTs that are aware and or able to help treat people with our condition post-op
I haven’t had my surgery yet; I’m scheduled for the 19th of February, so I’m coming up on it.
I live in Florida. I have a good pain management doctor, but he said the risk versus reward of giving me a steroid injection for the pain wasn’t something he felt was worth it, especially with my surgery so close.
I don’t plan on working with a PT as I will only have one side removed, and I wouldn’t trust that they would know enough about it. I feel like I’m starting to have symptoms on the side that isn’t being removed, but I’m honestly scared to have both done at the same time and want to see what my symptoms are like once I recover.
I was seeing a PT prior to my diagnosis and had stopped because I had started classes, and it was too much. I’m glad I stopped because it can be dangerous going to a PT when Eagles isn’t diagnosed.
