Hello to all of you lovely ES suffers!
First off, I am writing for my husband and I know I will totally forget to leave out something. The amount of doctors, tests, scans, injections and basically monkey business over the last 2 years has been insane! He isn’t a fan of social media or typically joining discussions but I have found this is really the only way to get good information as most doctors do not have all of the real world symptoms that you guys/us go through. With his excitement I found you guys through the occipital neuralgia group on Facebook. I’m just so happy to have found you!
So, here goes a little history on him:
This all started, we thought back in Feb 2017, when his head pain was so great that I brought him to the ER. Turns out, he has had crazy symptoms for years that we have never put 2 and 2 together as problems until his pain all came to a head one day. In the ER, they did CT scans of his brain, crazy pain medications that didn’t help and a spinal tap. Everything showed he was ok so he was admitted to the hospital for 5 days while they ran more tests. All types of head and neck MRI, MRA, MRB, CT and X-Rays were done and nothing was found. Basically everyone was clueless on what could be causing his ‘headache’. Which, btw, is not a headache or migraine. It’s more head pain. After the hospital we were seen by a neurologist that basically said, you’re healthy, I don’t know what’s wrong with you. So we set up appointments and were seen at the Mayo in Rochester. That neuorlogist listened to his symptoms for about a hot 30 seconds and said, you have occipital neuralgia. He then set my hubby up with nerve blocks and then a radio frequency ablation on the occipital nerve. Yep, that didn’t help at all! Then he wouldn’t see us again, said there is nothing more he could do. After the Mayo, we have been to 6 more neurologists, 2 different pain clinics (we have been through every nerve block that can be done in the head and neck plus trigger point injections as well), 2 neurosurgeons, chiropractor, physical therapy, shoulder surgeon (shoulder surgery was done to see if that helped), sedation dentist (4 crowns, all fillings were removed and replaced), acupuncturist, general, physical medicine (for botox injections), gastroenterology (did the fun throat tube/scope test) and 2 ENTs. All of these doctors to try and grasp at a straw to help him figure out where this pain in his head and neck was coming from!
This last ENT I was lead to because of your lovely doctor listing I found… Dr Ondrey at the U of M here in Minnesota. He ordered another CT and asked them to measure Joe’s styloid and behold… one side is at 38 mm and the other is at 37 mm. So he has ES. So now what…
The doc told us he would do surgery. We were stunned and unprepared at that appointment so we are going back on May 7th to ask the follow up questions and schedule the surgery. Why not, we’ve done everything else! He is also the only one we met with that actually knows what Eagles Syndrome is. That is crazy to me! We are really hopeful that this surgery will give Joe some type of relief. The more and more I read I think there is a high likelihood that ES might be causing all of his pain and problems.
To make my post longer here are some of his symptoms that he has been facing: hard time swallowing, choking feeling, now we add throwing up (like he coughs like he’s choking and ends up throwing up), head sensitivity (can’t handle wind which is the trigeminal nerve but we have been told it isn’t trigeminal neuralgia), pain on the right side of the face that starts on the upper neck traveling up the ear to the temporal area, top of the head pain and sensitivity, side pain that travels down and sometimes across the chest (we are thinking the vagas nerve is causing this), pain increases when he uses his right arm, pain also increases when he turns his head and also when he sits down. So many odd symptoms but in reading peoples posts most of these symptoms are listed.
I know we aren’t doctors but if any of you have head pain like this, could you let me know so I don’t think that we are on the complete wrong track with this? It just seems SO viable and with ruling so many other things out this is one thing that is actually making sense! Thank you so much for taking the time to read this extremely long post!!!