I never had throat pain like some do. I had wild headaches. Like stabbing, electrical and positional. My neurologist was convinced I had a CSF leak so I was sent to the CSF leak center at duke for testing. The first test was to see what my normal CSF level should be. Everyone is between 10-20. After testing me by getting the opening pressure and taking out CSF fluid and documenting my symptoms, they determined my normal is 18 (which indicated I probably had a leak since my opening pressure was 14). I was basically in bed not moving for 9 months because the positional headaches were so wild. When I finally got in for the CSF leak 2nd test it said I did not have one. I was told possibly I did since I was in bed for 9 months it may have healed itself. I will never know. But I continued to have the wild headaches.
I also had neuralgia in my face right side. I felt like I had the mumps all the time and had TMJ symptoms.
I knew I didnāt have TMJ because I sleep with a CPAP and if you open your mouth or move it will wake you up as it sucks air out.
I went to so many specialist until I was referred to Dr. Hackman. Everyone thought I had giant cell vasculitis so he cut the artery and tested it and did a laryngoscopy and he could feel my styloid.
He then ordered my mri and CT scans from Duke and could see them.
I also had and still have double vision and blurry vision. Every eye specialist and Hackman says it has nothing to do with Eagles but there are a lot of people who have these symptoms. I was told my muscle was getting weak and to wear prism glasses hoping the muscle would strengthen to avoid another surgery on my left eye.
I did have some trouble with swallowing but not sure if it was Eagles or Thyroid. I had my right thyroid removed at the same time as I had several nodules.
I started in February of 2017. I woke up with severe right arm pain. Went to specialist and pain clinic. I had four injections in my spine C3-5 which would take away my pain for a while. I am not sure if the styloid was pressing on that too or different problem.
I do know from reading articles published on Eagles that the one common denominator everyone had is calcium issues. I definitely have that.
That started in college as I had foot surgery as a large bone spur grew on the end of my right foot. I had it removed as I couldnāt wear shoes. My spine is full of bone spurs and basically all my joints which press on nerves.
My neurologist believes I have also have a condition that is attaching my nerves but they havenāt found it yet.
My styloids were pressing on my Carotid arteries and nerves. I got 80-90 percent relief right after surgery from the wild and positional headaches.
Oh I have had many surgeries taking out spurs and scar tissue. For years my neurologist said I have an issue with calcium but didnāt know why. He even gave me medicine to decrease my calcium.
Oh I had the ear pain, tinnitus.
I know this is a lot but those are basically my symptoms.
I was surprised that Duke missed the diagnosis with all the scans they did on me.
I still have double vision but again I was told by every specialist that wasnāt due to Eagles.
I just have started to get a few stabbing weird headaches. I am going to call and consult again with Hackman. It may not be the same thing as I am having calcium deposits in my brain. And just recently I have a little ear pain.
I will still say I am so much better. I could not have lived like before. I really thought I had brain cancer or something.
My surgery was very easy for me. A lot easier than what most say but again I had robotic. They cut like five holes in year mouth and the have great access if you are a candidate for the robot. Some people are not but they will let you know.
There is a nurse in the ER at UNC hillsboro that had Eagles. She said that see did it in California as that is where she was from. She did well except a little nerve damage.
But working so close to the nerves that is a risk.
She said she can live with it.
I hope you find someone that can help you. Iām glad you are getting several opinions. I did. I always think more than one brain is better in any situation.
Personally I can not say enough about Hackman. He holds one of the highest honors where doctor vote on what doctor they would want to operate on them. That said it all to me. He has several specialties. He also does reconstructive. Head neck surgeon. Experience in vascular surgery. From what Iāve heard of Samji he seems to also be an excellent choice.
Who diagnosed you? What are your symptoms.
I hope you find the right choice for you and have great results.
Best of Luck!