I will bring it up at next appointment. Doctor said something that went right over my head… The films show issues on left side, but all my pain is on right. Forgot about that until just now. I really appreciate you checking in. I’ve lived with this so long I go through the phases where I am actively researching then I just get in the “whatever” phase. I guess the “whatever” comes on when sleep is not going well. Thanks! Hope you are having a good day!
Thank you all so much for the support and prayers!!!
@ DeeG - I completely understand the ‘whatever’ phase! We have visited that phase so many times!
Deeg. Neurosurgeons are not the right doctors for ES. Find a head and neck surgeon that specializes in Skull Base surgery mostly for cancer patients. This is a very specialized field.
I have a neurosurgeon, wonderful doctor, never heard of Eagles syndrome, did not see it even though it extended very close to the spine. Reason. Eagles does not show up on MRI and neurosurgeons use MRI.
However, he was very interested when I brought him my surgical report after my external surgery and my 3D CT picture of the Eagles. He concluded that perhaps neurosurgeons could consider this before doing cervical surgeries. He was interested enough to spend a bit of time with me and asking for my surgical report.
Beane, I hope things improve from this point. At least, your doctor seems qualified. Would you please go to the doctors category and start a discussion with his name and then give us details. I believe he may be a great addition to our doctors list in the future. Your addition cod mean hope for others.
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Hi Emma!
He is actually on the list already. He is Dr Ondrey at the U of M in Minnesota. He is very qualified and has been such a help! If you would still like me to go to that section I will but he is on the list. The doctor’s list is how we found someone near us to set up an appointment with. What a wonderful research tool!
Emma did lots of the work on the list, we have her to thank for it, & Christian22 & heidemt.
Best wishes to your hubby, I hope that he heals quickly & that maybe this is the answer to his symptoms…
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Hi DeeG,
Keep in mind that even though your left side may look more like ES due to styloid length or s-h ligament calcification or both, a shorter but thicker or more angled or twisted or very pointy styloid can still cause ES symptoms. Many doctors don’t take those things into account. They only look at styloid length or ligament calcification/lack of it. You should ask anyone who views your CT to look at the contour, angle, thickness, pointy-ness of your right styloid & not just the length. Also verify if you have any s-h ligament calcification on that side. Some doctors don’t take s-h ligament calcification into account either. Remember, too, that we are each uniquely designed so your cranial nerves & vascular tissues are likely differently positioned on the right than they are on the left thus any difference in the afore-mentioned physical features of the styloid or a calcified ligament could, therefore, affect those more profoundly on one side than the other.
Hi DeeG,
I recently met with my surgeon who was the first one to tell me that my calcified ligament was thick and curved on one side and longer and pointy on the other. The thick one is the one causing most of the problems.
It makes sense that a surgeon who believes in ES and does many surgeries knows what they are looking at and can see the minor differences that a “regular” surgeon doesn’t see.
all the best to you.
No need to post on the doctor discussion. I did not know he was on the list. I was too sick for about 2 years to track the list. Still only posting from my cell mostly when lying down.
Just thrilled that Eagles is getting some attention. I am noticing new websites with information on Eagles. Mayo clinic an a few others. Nothing as good as ours, but we are making headway and just in the last two or three years.
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