Feeling very stuck and I'm not sure what my next step is

Hey everyone,

So about a month ago I was diagnosed with eagle syndrome after dealing with symptoms for about two years. An x-ray showed calcification of the stylohyoid ligament and elongated styloids. Right now I'm a 23 year old made who does not have insurance and I'm only working two nights a week because my hours have been cut because it's hard for me to focus at work while dealing with the pain in my throat/neck/jaw and hearing issues.

With the fiasco going on with healthcare right now, I'm really not sure what the next step to take is. Call an insurance company and just fork out the cash to get covered ASAP? Or should I go through the new healthcare.gov site to find something more affordable? I don't make very much money obviously and the few health insurance companies that I've called have told me to get Medicaid and basically hung up me. After calling Medicaid and trying to get on a plan through them they told me that I don't apply for coverage and, again, hung up on me.

I just feel very lost and discarded by the medical world which is funny because I had been planning on going to medical school until all of these problems started accumulating. Any advice you have for me whether it be general, literal, or philosophical advice on how to get through this would be much appreciated.

-Ty

If you need to vent, we definitely understand. This group of ES are here for you! The website link below is an organization to advocate for patients but maybe they can find some help in your state. If not, if you are able to is do a Internet search for “patient advocate”. The dr that diagnosed you, does he/she know of someone that can help you?

www.patientadvocate.org

http://www.patientadvocate.org/requests/publications/National-Uninsured-Resource.pdf

Ty, I'm really sorry you're going through this. Having Eagles without insurance is not fun. But I'm thinking that the timing is actually good, because of the new healthcare act. Did you see the featured discussion at the top of the discussion page about the affordable healthcare act? I would think something like that would be the way for you to go.

Good luck Ty.

I would go to your doctor that is going to do your surgery to get help. They should be able to get you pointed in the right direction. You can also try to call a Social Worker at the Hospital where your surgery will occur. I am sorry you are having such difficulties. It is a hard enough process to get to diagnosis but to not get treatment when you know what you need seems maddening. Praying you get it all worked out. You must keep trying!

I am soooo sorry you are going through this! :( It must be so frustrating and disheartening to say the least!

I pray that what the others have suggested works out for you!!

Don't give up and once you are healed make it a point to be one of the best in the field to help others!

Ty-just to go out on a limb-Is there a teaching hospital that might take you on with a scholarship to teach new ENT's, skull surgeons, etc to help you find relief from this. My doctor was very young, finished is chief residency in 2010) eager, smart and had done this before many time. Find a SURGEON! don't let them send you to neurologist (nerves), pain specialists since you already know you are in pain. I saw them all and it was a surgeon that knew what to do.

Vent here all you want-we all have.

Just don't give up! I did for 5 years after my 2nd failed surgery and I regret that but I was done after all the screw-ups. Then I started doctor looking again so I don't recommend stopping it did me no good and left me in pain. But then I think the delay allowed my doctor to graduate and be available for me so it might have been a good thing. But I'm just justifying-but it all worked out. But I did it because I didn't want to wait and have it done 2 years later when I was 70-keep pushing and get it done while you are at your best ability to heal. Mine at 28 was much quicker the one at 51.

Keep pushing forward and don't take hang ups as an answer and drive the bureaucrats nuts. That will help relieve the stresss!

Shawn

Thanks for the replies everyone! It helps so much just knowing other people out there have been fighting this as well and understand the crap this puts you through. I'll just reply to each person to answer any questions or let you know where I'm at with your reply.

Amy - I'll definitely use all the resources I can get my hands on! The doc that officially diagnosed me was actually at a free clinic and I had to fight tooth and nail to get the x-ray done, even after telling her my symptoms were identical to eagle syndrome symptoms I found on mayo clinic's site. I'll keep looking for docs around me that would be willing to help a charity case like me and also have knowledge of ES.

heidemt - I'm so grateful that healthcare reform is happening at this time too, I'm definitely lucky considering my situation compared to so many others.

happy1030 - That sounds like an awesome idea and I'd really like to get in contact with a hospital that has exp with ES and could give me a break on the finances or some kind of payment plan. I think that is probably the best course of action I can take right now, thank you for the idea!

Shawn - Thanks for the inspiration. This is such a pain and it feels like it's come at the worst time it could have for me. At first when I found out it's like I could hardly get out of bed because I just felt so unlucky and so mad at the world. I think I have a tough road ahead of me but I definitely have a lot more to be grateful about than what I thought I did at first.

Lailei - Thanks! I didn't look at it that way but I know I'd make a great doctor now especially since I understand what pain can truly do to a person. The encouragement really means a lot to me!

Ty; do not kick yourself about how this makes you feel-one day is ok the next it feels like someone was sticking a hot nail in my ear. every day was different and a new experience. An issue was the vertigo when I was driving in 1989-1990. The one on the left it was not a problem. My advice is to never let a doctor say that your symptoms are not Eagles-they don't know and they keep proving that. I finally got lucky in July and had surgery in September with a great surgeon. dumb luck.

I stayed in bed, hated my situation, doctors that wouldn't help-they will give you Rx that don't cure it and make me dumb and unable to get out of bed. I hope you have friends support just to be around you and have that support even thought they can't cure you, having that makes a big difference-I became depressed and need to seek help and found a free group set up for depression caused by chronic pain. it help a lot-although I became the focus since no-one ever heard of this including the Dr. running the thing.

Look for local support that might help your mental state and get you out of the house. I isolated and that did no good.

From what I've seen in the responses to your post, you have received a lot of suggestions that could lead you to the relief you need. These guys here know a lot and have many experiences that can be recommended or tell you to run from to save wasted time. Many of us spent a lot of wasted time out of desperation to stay with a doctor hoping they would help us if we stayed. If they don't act right away move on because they are already useless. That's why I liked my last doctor at Cedars-Sinai; he saw me once and said well we will have to take that out-and he did.

luck or skill-take either but look for skill.

you are on the right path. PS think about this when had my first styloid removed you were (-2) years old--ok I feel old now. But this ES will make you feel ancient fast so I hope you get the service you need soon.

Shawn



Ty said:

Thanks for the replies everyone! It helps so much just knowing other people out there have been fighting this as well and understand the crap this puts you through. I'll just reply to each person to answer any questions or let you know where I'm at with your reply.

Amy - I'll definitely use all the resources I can get my hands on! The doc that officially diagnosed me was actually at a free clinic and I had to fight tooth and nail to get the x-ray done, even after telling her my symptoms were identical to eagle syndrome symptoms I found on mayo clinic's site. I'll keep looking for docs around me that would be willing to help a charity case like me and also have knowledge of ES.

heidemt - I'm so grateful that healthcare reform is happening at this time too, I'm definitely lucky considering my situation compared to so many others.

happy1030 - That sounds like an awesome idea and I'd really like to get in contact with a hospital that has exp with ES and could give me a break on the finances or some kind of payment plan. I think that is probably the best course of action I can take right now, thank you for the idea!

Shawn - Thanks for the inspiration. This is such a pain and it feels like it's come at the worst time it could have for me. At first when I found out it's like I could hardly get out of bed because I just felt so unlucky and so mad at the world. I think I have a tough road ahead of me but I definitely have a lot more to be grateful about than what I thought I did at first.

Ty-If you havn't read this in previous post. The one person on this site that got immediate surgery was because the ENT she went to had Eagles and knew what we were going through because he had gone through it too. familiarity might be the only way. Like my dad's oncologist was terrible because he never dealt with cancer personally-empathy is not taught.

Hi Ty,

Hang in there guy. I think you have a wealth of information given to you but your fellow eagle suffers. Go from there and set up a plan to investigate those possibilities. Be your own advocate and push. I am sure you will get the help you need. Wishing you all the best in finding the best medical care to address your eagle's syndrome. Take care and God Bless!

Ty, I am so sorry that you have eagle syndrome at such a young age. It's true what Shaw said that it can make you feel ancient. It's so tough to stay motivated and continue to work hard through all of the pain and the many, many disappointments. I can imagine it'd be at least 100% more difficult without insurance coverage. :(

I hope you have an excellent support system. Either way, though, it's going to be up to you. You need to stick with it until you are well. There may be times when it seems like you should give up, but that will never work. Instead, come here and complain. We'll "listen" and be there to support you. You need to follow through to the end so you can reclaim your life and become a talented doctor. Maybe even an eagle syndrome surgeon?

I agree with all of the suggestions above. Make sure that if you sign up for insurance, you know ahead of time that they will cover the surgery. I know that may seem obvious, but when you're really sick it can be hard to think of everything. I really hope that you can find an affordable option aimed at people, like yourself, who are unable to work much because of the disability.

I think a social worker could probably be helpful.

Also, since doctor fees add up fast, try not to waste any time with useless doctors (easier said than done). If at all possible, go only to surgeons listed on this site because you'll know for sure that they can help. Most of us go to a lot of doctors that can't help. You have one major advantage in that you figured it out on your own with a little help from the Internet. That's wonderful, because diagnosis is the most wasteful part of the process.

I am one of the lucky ones that have had surgery. I had both sides done, and the surgeries were miraculous. I feel way better. I feel more and more like myself every day, and my kids are glad to have me back.

You'll get there, and we'll all celebrate with you. In the meantime, keep us in the loop.