Struggling to find a doctor to help
On January 12, 2025, I was diagnosed with something called Eagle Syndrome. That is the easy name for it. Basically, there's a long, skinny bone behind each of my ears. They are also called an elongated styloid process. Mine just happen to be too long and are pressing on both my jugular and carotid arteries. All it will take is a bad jerk from the back, turning my head wrong, or any other number of movements that will cause one of these bones to puncture either a vein or artery, and I will be dead instantly.
I have only been able to find one doctor in my state who treats this, and they won't see me because they had a problem with my insurance and won't work with them anymore. I have searched high and low here in Arizona, and found nobody, even at a world-renowned neurological hospital. My next step is to try to contact the Cleveland Clinic and see what they say.
This has been very hard. I made a box that I put a small slit in, and I have been writing down small things to my daughter and both of my grandblessings. My mom, too. She is 80, but there is still a chance that I could pass before she does.
Living my life knowing that every day could be my last is very taxing mentally. I am trying to do things that I have always wanted to do: make memories, not so much for me, but for the people I am with.
I started journaling again, trying to write down the things I want people to remember about me. I don't know what else I can do to make sure that I am not forgotten. I do want to start taking more pictures so that I am still around for my grandblessings to look at and remember me.
Hi,
!
First off, I am so sorry you are dealing with this rare condition and that you are struggling to get the level of medical care you need and deserve. Asmentioned, the Cleveland Clinic is seeing out-of-state people again, though it may depend on which particular practice/specialty you are looking to connect with. I do hope the Cleveland Clinic is willing to see you and that they can offer some help for your situation. Would the Mayo Clinic be an option for you or have you already tried reaching out to them -- https://www.mayoclinichealthsystem.org/services-and-treatments? They do much more than cancer treatments and my aunt with Parkinson's has been a patient at Mayo for years.
Regardless of your health situation, I think it is wise and such a gift to your family members that you are journaling and writing little notes for your loved ones. What a special gift to future generations! I lost my grandmothers many years ago and though I peppered them with nosy questions, I still think of dozens of things I wish I had asked them about. So, these thoughts and messages you are leaving, written in your hand, are an irreplaceable gift.
That said, I do hope you can get the medical care you need and that you will have many, many years to add messages to the box and pages to your journal.
Gentle Hugs, Erin, Team Member.Check Cleveland Clinic is seeing out of State people yet. They quit for a bit
Hi
, that's a scary proposition! You can also reach out to NORD.org, and see if they can make any recommendatioins. Please let us know how it goes with the new doctor. - Warmly, Donna (Team Member)
