Today I spent twelve hours of travel and waiting, to go all the way across the state for a 45 minute appointment to see the *special* specialist. The purpose of this visit was that ENT#3 suspected ES but wanted confirmation from ENT#4.
ENT#4 said (drum roll, please...) he's not sure if it's ES and he's not sure it isn't. He's ordered more tests and prescribed high dose NSAIDs. Disappointing, to say the least...
So, is this the normal progression of the diagnosis of the disorder? How many ENTs have you seen before this was diagnosed? How many tests, prescriptions, doctors, scans, reports have you gone through? How much time and money have you spent in the process of getting this validated???
And, do NSAIDs work? Has anyone had successful symptom management with them?
The other thing that was such a let down was that the doc said that we needed to wait and see...to definitively diagnose ES, it had to get worse...
I'll admit that the doc was nice, thoughtful, caring, and knowledgeable and my dissatisfaction is not with him, but with the process. I just wish all the time and money, being away from my work and family had resulted in something more satisfactory...
Sorry that you've not got your diagnosis, Chrissy- very frustrating, but at least he didn't give you the brush-off. Everyone's stories are different- some people have been diagnosed just on scans and symptoms, others have had lidocaine injections into the area, to see if that helps, and if so it's used as a diagnosis. A lot of people have spent years trying to get a diagnosis, or if they have, then struggled to get surgery.... Sometimes people have to be really pushy for a diagnosis, but that's not always easy.
I never found that NSAIDS helped- it depends what sort of pain you have. If nerves are compressed by the styloids then they won't help, you'd need medication for that. Although sometimes if muscles get knotted because you're tense with pain it can help with that- some people have found Baclofen helps too.
What other tests has he ordered? Does he want to try injecting steroids or lidocaine into the area, or more scans?
Keep strong, and don't give up!
He wants to do a MRI/MRA to see if the blood flow is being affected by the styloid or stylohyoid ligament. Just got a call from his office that insurance won't pay for it.
That would've been really helpful- I'm sorry, I'm UK so don't know much about the US system- is there any way you can get on to the insurance company to explain how necessary it is for a full diagnosis?
I think a CT scan w/ contrast shows whether there's vascular compression or not. If so, your insurance might cover that as it's most likely less costly than an MRI/MRA, but I haven't truly done a price comparison, so I could be wrong. I think Jules made a good suggestion. Appeal to your insurance company. That said, ES without vascular compression is also debilitating and is most effectively dealt with surgically.