One year later

A year ago today I traveled to Seattle to meet with a special specialist about what my third ENT deemed suspected ES. After an hour long consultation the doc said he couldn’t dx ES and that things would have to get worse for him to do so. He sent me away with Rx strength NSAIDs. I was so discouraged and had resigned myself to a life of pain that I never started the NSAID regimen. About 6 or 8 months later after the pain intensified, I figured what the heck, I might as well take the meds. Sure enough, I got relief from the pain, though other symptoms like lump in the throat sensation never did disappear. After the Rx was gone, I started on the OTC NSAIDs which continued to do the job. I was forced off them though about a month ago because of a suspected NSAID-related peptic ulcer. At first I remained pain free despite not being on the NSAIDs and thought perhaps my ES symptoms were really just some inflammatory process that was fixed with the anti-inflammatories. Nope. In the last week or so, the same pain symptoms have returned and at nearly the same intensity as before. So a year after this appointment with the special specialist, I’m no better off than I was then.

Thanks for letting me vent. I’m always so reassured when I visit this site. I know there are others like me out there with similar stories. You know what this is like and how discouraging and debilitating this can be. I can always rest assured that you all know it’s not “all in my head!”

Well I’m glad that you’ve had some less pain for a year, but so frustrating at now having to come off the NSAIDs. I can’t take them because of stomach problems too. Would you be able to get a referral to the ENT now the situation has changed and you’re not able to take his prescription? Or try to get an appt. with another ENT from the doctors list? As anti-inflammatories have helped you, you might benefit from a Lidocaine injection into the area which some doctors are happy to do? Again, it’s only a temporary treatment, and you can only have a few of these, but if you can show that you’ve exhausted all other options then it might help you get surgery? And also some doctors use this treatment as a way of diagnosing ES (if it helps with pain relief then it confirms ES for them), which would maybe convince your ENT about the diagnosis?
Like I say, either that, or try another doctor if you can…
And feel free to vent- there’s so many of us who’ve been fobbed off and left in pain for longer than we should have, so we do all understand!

Keep your doctor informed and don’t keep this information to yourself. I know how frustrating it is to talk to them. They seem so slow and so quick to dismiss symptoms. It’s a long, slow process. Keep true to what you know.

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Have you had a CT performed with no contrast and less than 1 mm slices? The radiologist can build a 3D model off of that to confirm elongation of the styloid process… you need to be your own advocate. I really like Dr. Samji in San Jose, CA. He is the most experienced with ES in the US and he never dismisses your symptoms. I would recommend looking into a visit to him. He takes your concerns very seriously and knows exactly what to look for.

Hi there, I had the same stuff going on too! I’m sure we could go back and forth for days on these doctors! To find one that half way cares is very hard to do! Anyways, you have to figure out what you are doing that aggravates its, like for me I went to physical therapy and found out that I had to adjust the way I sleep, I was a stomach sleeper which is the worst thing ever for es!! So I had to train my self to sleep on my side it took a while … what really helped was hugging a pillow, also be aware of doing things over your head , like getting things out of the attic , when i go to the batting cages for the next 2-3 days I have pain in the middle of my neck, I’ve learned to live with the pain… it sucks, and I’m sure when it gets worse I eventually will get the surgery! Hope this helps a little…