New Here - I'd like to hear other's experiences

Hi! I am new here, so I thought I’d introduce myself. I’m Brittney, I’m 32, and I live in Indianapolis. I do not have a definitive diagnosis of ES (yet), but GP has referred me to an ENT, who I am told has experience with this. I still have my tonsils and have had no trauma to me ear, neck, or jaw; but I am a tooth grinder.

This all started out as an earache last June, but has gotten much worse over the last year or so. This pain is in the foreground of everything I do, it interferes with my ability to be a functional person some days. I’d begun telling my husband, parents, and best friend that I just don’t know how I am going to live like this for the rest of my life. And after so much time with no answer, some of the people in my life were convinced that I was a hypochondriac and this was all in my head, and I was starting to believe them.

Two things helped my find ES - A really good friend who was determined to help me find an answer; and being what some people call a hypochondriac, but I just call vigilant. My best friend started sending me links to articles about ear and jaw pain. ES was one of those links. I have had a lot of symptoms that could be contributed to TMD, but I have others that TMD just does not explain, so I began keeping a list after I saw the TMJ doc. It is quite a list with a lot of range and I’ll post it if someone would like.

I didn’t think ES was the problem but out of curiosity, I got a copy of the panoramic x-ray taken in January; and there it was, this long skinny, needle sharp piece of bone starting to take a u-turn towards my throat. I went to see my GP, who fortunately is one of those wonderful doctors that listens to you, and showed him the x-ray. He kind of sat back in this chair, then said I might be “spot on” and referred me to an ENT. I meet with Dr. Fang on Tuesday - I am taking my x-ray and my list of weird things that happen. It is weird to say that I am happy, but the possibility of just an explanation for the way I have been feeling, has gotten rid of a lot of the anxiety for me. I am confident that this is my problem. Next question is what to do about it. And that’s why I am so happy to find this forum, and connect with people who understand this. I have been reading people’s posts and stories that last couple days, and I have learned more about ES here, than most other sources. It will be nice to be able to talk and get input from others who have actually experienced this.

I can totaly relate. The pain had completely taken over my life. I thought i will never be able again to be the dad and husband i used to be. Went through one year of treatment with all kinds of antidepressants etc. before finding out that it was ES. Im scheduled for surgery in 3 weeks so my hope is that all this will come to an end soon.

Well done to you and your friend for helping you get this diagnosis! There’s lots of info and links to discussions in the Newbies section under ES Info and treatments if you’re considering surgery, if you’ve not seen that yet. And a good idea to take the info with you, although not all doctors will take notice of the bizarre symptoms which we get, so it might be an idea to stick to the more well known ones to start with to see how understanding your doctor is. (Unfortunate name- Dr Fang!!)
Glad that this forum has helped you. Best advice if you’re thinking of surgery is to find someone experienced, and make sure that they know to take as much of the styloid as they can. Hope that you get on okay, and we’d like to know how you do!

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Benyon, I hope your surgery goes well and that it resolves what you have been going through. It is so hard and frustrating to white-knuckle it through your day, only to have nothing left over to take care of the other parts of your life. Sometimes I feel like such a bad wife, daughter, friend, employee, etc.

Jules, Dr. Fang is an appropriate name considering my styloid looks like a razor sharp fang! I am hopeful that since Dr. Fang is familiar with this condition that he will be open to what I have to show him. I will need to meet with him and discuss my options before I decide what treatment plan to go with, but I must say I’m less comfortable with the idea of Botox, steroid, or analgesic injections than I am with the idea of surgery. Especially since I am having some scarier symptoms like dizziness, brain fog, and visual disturbances (flashes of light when I turn my head too far in either direction).

Sorry, I think it is ironic for an ENT who might be able to help with ES has the name of Fang. I hope he works out for you, that would be cool. So many of us have given ourselves names describing our syndrome. I do hope that Dr Fang can help you. It would be cool for him to gain recognition and FAME in our group. We could easily remember that name. Best of wishes. If he cannot help you check our doctors list. There are others that are good.

Unfortunately, I was dismissed by Dr. Fang as a “stressed out” and “overly
sensitive” person and told that the source of my pain is basically my
personality. Sadly, I have gotten used to that. I am not convinced the
doctor knew what he was looking at on my x-ray. My panoramic shows obvious
ossification and elongation where there shouldn’t be any bone, but I was
told we are all “a little asymmetrical”, when I asked if we all have a
needle sharp segmented styloid that takes a U-turn towards our throat, he
just didn’t answer me. He recommended an MRI so he could pawn me off on a
neurologist, which I’m not going to pursue because I don’t need an MRI of
the base of my neck - all my pain in on the right side of my face, neck,
and jaw. I am now waiting to hear back from a doctor in California who is
reviewing my x-ray.

No surprise, I am consulting with a doctor in CA as well. I expect you will be treated better if it is the same one, I am consulting. Keep looking,I think you are right. Doctors can be arrogant when they see something new and cannot explain it.

Sorry to hear about your appt.- that must have been so infuriating, especially when you have to keep waiting for different appts. and travelling further each time… hope that you have a better appt. next time. Hopefully if the doctor looks at your x-rays he can let you know what he thinks beforehand to save a wasted trip. Thinking of you!

That’s so infuriating. Most doctors are great, but the ones that blame us are really hard to stomach. I hope Dr. Samji can help you.

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I, too, had a piece of cartilage under my hyoid bone take a ‘u-turn’ toward my throat. It was removed on May 3 and I’m feeling better, now. A skull-base surgeon was able to see it poking into the space above my vocal chords. I couldn’t see it on the video, but he noticed it. He also injected the area with novocaine or markaine to numb it, and that temporarily resolved the strange symptoms I was having (trouble laying down and turning my head to the right). You might ask for that and see if the pain in your ear goes away. I’m not sure if ‘referred’ pain, (pain that is remotely connected to a structural problem elsewhere) is so immediately affected. It might take time. Marcaine only numbs things for 2 or 3 hours. Then again, it might. I’m not a doctor.

I am waiting to hear back from Dr. Braun’s office to schedule a phone appointment. I am trying to be patient. I may go see the maxio-facial surgeon who removed my wisdom teeth just to get his opinion and have him help me understand the x-ray a little better. I have read wonderful things about Dr. Samji from others on this forum, I may pursue that next. Thanks everyone for the support :slight_smile:

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Oh - I’m sorry - I’m getting my people mixed up - I thought you had contacted Dr. Samji’s office. Good luck with Dr. Braun!

I am also a great fan of Dr. Samji & endorse him wholeheartedly. He did both of my surgeries & my life has returned to normal. YIPPEE!!

I have heard good things from other about Dr. Samji. Where is he located?

Here is my panoramic from January if anyone is interested.

Dr. Samji is in San Jose California.

Dr. Samji also does phone consults, but you will need to send him a copy of your CT scan first.

Need to clarify my statement. Dr. Samji prefers a CT scan without contrast to any other type of scan. Your panoramic x-ray might be ok, though.

Isaiah - doesn’t he also now require the report from the non-contrast CT scan too showing the “styloid protocol”? I guess best to call his office to make sure what he wants.

To do a full phone consult with Dr Samji, you must fill out a new patient form and send records and the CT Scan. He charges 500.00 for the new patient visit, same as the phone consult. I think he will read your CT Scan and e-mail if you are a candidate or not. He did that for me and I was perplexed because I had sent in a patient form. They just got confused. I have a phone consult set up for October. It is worth it to me to get some answers about where it is pointing, what tissues, nerves, it is most likely affecting etc, because I cannot release my neck muscles. Since he is in CA and I am in FL. This is better than going to CA for a consult. I already know from his e-mail that I am a candidate for the right side. He will not redo my left side under any circumstances, so that leaves me possibly looking for someone else. That is all he told me in the email. I was confused about why such a short answer so I e-mailed back and they had just missed my new patient forms.