Why do they even ask you to rate your pain scale? Really I want to scream as loud as I can, and I'm a quiet person....until someday....
I didn't think to bring my MRI cds, I brought a picture off my MRI but it printed small and he wanted to see the MRI's and ordered a CT...
After poking around he said only thing he can think of (without seeing an mri/ct) is called "Eagles syndrome" which he told me to "look it up", and also referred to a TMJ specialist which I know a lot of you have already have been down that road with no success. But in the same breath he said the tmj usually just gives you nortriptyline to treat, which I'm already maxed on, so he said it was up to me if I wanted to rule that out.
And I have the CT and follow up with the ENT the same day I get in with my neurologist so it'll just be one big day of joy.
If this doesn't turn up anything I'll probably extract some teeth, but then, after that, there isn't really anything else left to try, can't go up on the meds that have worked.............then what?
Nice of him to explain Eagles syndrome to you, seriously! I’m rolling my eyes… http://en.wikipedia.org/wiki/Eagle_syndrome posting this for others to read it as I’m sure you’ve looked it up.
What are your symptoms?
Sorry to hear you’re in such pain, is it at the same level as before MVD or worse? What does your neurosurgeon say? Don’t extract teeth Lee!! Although I understand your wanting too, it’s more than likely the nerve not the teeth!
Try not to look to far ahead, I’m thinking of you and sending positive thoughts my friend,
(( hugs )) Mimi xx
Found this.. Patient with Eagles had Neck and Face pain, but was misdiagnosed with TN. There is apparently a surgical treatment, so not sure why the doctor just said the treatment is antidepressents . The Surgery helped this person.
I know what you mean about that pain scale question! When I was asked that by my current neurologist I I leaned toward her and said, “what the hell does that mean, anyway?” And after a moment she said, “yeah, right” and I knew right then and there she was the neuro for me!
But getting back to eagle syndrome. That’s usually associated with glossopharyngeal neuralgia. Was your 9th cranial nerve ever discussed before you had your MVD? Or nervus intermedius? Do you get any hemifacial spasm?
I haven’t been around the site for a couple of weeks so I’m guessing you’re back in really bad pain…sorry to hear that.
When the meds fail it is worth it to try MBSR (mindfulness based stress reduction). Worthwhile anyway.
Sorry that the ent wasnt any help, can’t believe a doctor actually is suggesting you look up eagles syndrome. Google is obviously his friend…seriously what a joke.
I can so relate to wanting to have teeth pulled out, I have one tooth that I really want removed. The dentist, the endodontist and the neurologist all say no. Ijust can’t help wondering??? Some days I feel like I should just pull it out myself and see what happens. A dumb idea, I know.
You’ve been through so much and I am sorry that your pain continues.
Hugs trish
Aww, i am so sorry shindig. Thats a bad stretch for you. Let me refresh my medication mind. You had mvd surgery in april and were relatively pain free as a result right? When did the oain begin again and has the pain changed at all? I have no idea what your options are but i want you to know that you are not alone. We all feel your pain and frustration. All the best.
I hate that what is your pain on a scale of 1 to 10 question also. If you have experienced really incredibly bad pain, your 10 on a scale of 0 -10 is going to be much higher than someone who has not experienced really incredibly bad pain. It's a totally subjective measure.
Yes, definitely ask your neurologist about how nerve blocks might help your condition, where to get them, who offers them.
I think any type of doctor can be trained to do a nerve block and offer them in their practice. I think you are right that pain specialist are specialists in blocks.
I had an ENT do an injection of lidocaine in the nasal lining which basically was a nerve block. The pain did not go away.
I had a pain specialist do a sphenopalatine ganglion block via long qtips applying lidocaine to the back of the nasal passage (it can also be done via needle injection into the ganglion.) Sphenopalatine ganglion blocks are sometimes used for people who have cluster headaches. You can find videos of this on Youtube. It numbed the pain temporarily, but it came right back when it wore off.
I tried botox, (which I was told later does not work for TN) which I consider a nerve block. That was done by a headache specialist.
Wish your MVD would have cured all your pain issues for a longer period of time.