Shindig, I'm sorry to hear that. How frustrating! You need to go to an ENT who is experienced with Eagles. I don't remember where you are. In my experience neurologists have been worthless regarding Eagles.
Yeah the neuro wants to do the gamma knife but everybody tells me not to because I'm 29 and it causes permanent damage to the nerve they zap.
Meanwhile I'm maxed on meds and still in agony, and have exhausted every option I can think of. And I work full time and hate taking off for these appointments, especially when it's for nothing like this seems to have been...3 appointments with the ENT only for him to tell me to go back to the neuro.
So sorry to hear this Where do you live? Are you west coast? This is more than frustrating after all you’ve been through
Always have hope though and never give up Doctors drop the ball and sometimes, most of the time, it’s the patient’s job to be his/her own advocate! Always have faith and never stop trying to exhaust every avenue We’re rooting for you every step of the way during this battle and will never leave your side!!! EXPECT A MIRACLE
Shindig, I see you're on the west coast. I would like to suggest you call Dr Samji's office tomorrow and arrange to send your CT results to him. He's in San Jose CA and very skilled in Eagles. I really think there's a good chance he can help you.
I agree with heidemet. I would contact Dr. Samji. A phone call and sending him your CT with medical history can't hurt. Sounds to me like you Washington Guys need to come to California or AZ. Dr. Milligan was my last hope here and I had Samji on speed dial. Northern Cali is much closer than AZ.
My first responds when I read some of these post is I actually visualize myself punching Doctors like your doctor in the throat. I have had that vision with a couple doctors I have seen. Don't let them knock the wind out of your sails.
Don't give up and it is probably a very good thing he backed out. It was not in the plan for you for a very good reason. When your in severe pain I know that is hard to believe. Have Hope, Have Faith and as Amyblue said "Expect your Miracle." Hang in there kiddo.
I don't know how to spell the ENT's name but it sounded like Dr. Brawny. He seemed nice.
I'd told my neurologist about the ES and he said absolutely not. Said it was impossible to cause the neuralgia I have in the front of my face.
I have a triangle of pain spots, one in the back of the throat, one at the jaw by the salivary gland, and behind the left nostril, in front of the back throat pain. The back throat pain is above and behind the tonsil. All on the left side.
When it flares up I get an ice pick stabbing pain through the inside of my left eye back to my tonsil. Then across all 3 branches of the trigeminal nerve constant burning, ripping, searing, pain, constant for 2 years.
I take 100mg nortriptyline, 120mg cymbalta, 10mg percocet, and starting back on oxcarbazapine which is basically what I was on before my MVD surgery. But still in agony.
Run, don't walk to Dr. Samji. Best advice from above, send CT scan to Dr. Samji. At the very least, you will get a qualified opinion. I would agree to just go to Samji and get the job done right. I had intraoral and sometimes it still hurts, so I will be going to either Cognetti or Samji , if I get to a point where I think I need another surgery. Samji is closer to you, and I hear he is awesome.
Don't let the wind out of your sails, that doc did you a favor, he obviously is not comfortable doing it so you are better off not having him for your surgeon.
And just to help , I had all the symptoms you have and they are all better and have been impacted positively with the intra oral surgery, so I can say unequivocably, Yes, all those pains can be caused by ES. I will also add that I did get a night guard prior to surgery that made a significant positive improvement on my facial pain TMJ. I still use it but do not know if I need it or not anymore. That said, some of those symptoms come back from time to time when I have a sinus allergy etc. If they come and stay or get bad, I will be having a second complete surgery.
I agree with Emma run. Of course the neurologist said NO Way it is ES. If it is and you get better he looses a patient and $$$ and even worse he would be wrong. Don't give up! Change your approach and look else where.
Emma is right - that doc did you a favor by not doing the surgery. I made the mistake of getting my first surgery done by a local doctor who wasn't familiar with eagles and I spent the next year and a half traveling all over the country trying to get someone to redo it. It's much easier getting one of the "good" docs to do a first eagles surgery than to redo an existing one.
Shindig, Maybe you could see a dentist or oral surgeon to start with. They seem to know more about eagles than ent's do. Both my dentist and an oral surgeon diagnosed me with eagles at separate times. They both stressed the importance of removing my styloids. I had intraoral surgery, which most don't agree with, but my Surgeon Dr Cognetti is a rock star so it turned out great. I had a post op scan and the entire styloid was removed. Don't give up. Your symptoms are the same as mine were.
Dawn I was referred to the first neurologist by an oral surgeon I was referred to after going to the dentist....after I wasn't getting anywhere with my general doctor.
The oral surgeon felt around in the roof of my throat until I screamed then said go home and maybe it'll get better after 5 months of progressing pain. I flipped out, told him it's only gotten worse and after thinking for a minute he said there were moving parts and maybe something was compressing a nerve, so he referred me to a neurologist at swedish neuroscience.
Long story short, after an MRI, Spinal Tap, and every blood test possible, I was told they found a lesion on the MRI (then got the spinal tap) but all the fluid tests were normal. They diagnosed it as a 1 per 1 million population disease called "Tolosa-Hunt Syndrome" which causes the eye pain I was experiencing. I took high doses of steroids for a few months but the eye pain never got better and the neuro just kept upping my gabapentin and was unsympathetic at the same time my general physician pushed me to get a second opinion.
I got a second opinion at Northwest Hospital here in Seattle from my current neurologist. He was went to med school in the military and was head professor of neurology at yale for decades and currently teaches neurology at UW with 35+ years hands on experience. At the first appointment he gave me 2 drugs that completely eliminated my pain for a couple weeks, then faded in effect. I eventually reached the max on nortriptyline at 150mg/day and was at 1200mg oxcarbazapine when he gave me cymbalta which helped but is slow to work so I ended up on percocet as well which still doesn't do much. The tricyclic anti-depressants have been the best pain relief I've had out of the dozen meds I've tried.But I'm at 120mg cymbalta now as well and can't go up again, and it's faded in effectiveness.
I have terrible pain down all 3 branches of the trigeminal nerve. But also in the back of the throat which is probably that G nerve glossawhatever that's usually affected by ES.
I was waiting for an appointment with my neurologist after the pain came back, and it was a 6+ week wait so I went to my general doctor and got a referral to the ENT at UW main campus. He said it was likely ES at our first visit, he seemed very familiar with it. He scheduled a CT, he injected lidocaine, then he referred to surgery. A week after booking the surgery they cancel it. Maybe my insurance said no when they tried to pre authorized it, I dunno. They just said to go back to the neuro surgeon who did the MVD.
I'm so sorry to hear that you went through all of that. I hope you can get the help you need very soon. When will you be able to find out exactly why your surgery was cancelled? Do you clench your jaw or grind your teeth? I have trigeminal pain too, I think its from clenching my jaw. I've been getting the run around lately between my dentist and doctors. I actually cried like a baby the other day from pain......30 years old.....I felt pathetic. My surgeon said that its not related to ES. I have to agree because i have (or had) ES on both sides and I dont have this issue on my left side, which still has the styloid. I can feel pressure on the right side of my face. It causes me to see spots, have extreme jaw pain and sinus pain. Does that ever happen to you? Im just trying to compare symptoms because sometimes it helps to know that we are not alone. I can tell from your posts that you are in terrible pain so I hope the best for you.
I agree with the advice to contact Dr. Samji. I am also on the west coast, and I can tell you that I called all over Seattle and there was no one. I finally flew to Philadelphia for surgery with Dr. Cognetti. Had I known about Dr. Samji, I would have gone there. It's worth it to travel for help. Too bad we can't just get a good surgeon in Seattle. So sorry you got cancelled on.
I definitely think you'd be glad if you sent your CT to Dr. Samji. It's so refreshing to talk to someone who knows what they're doing. I even traveled to Portland for a so-called "expert," who said he'd done a bunch of ES surgeries, and who assured me I didn't have eagle syndrome. I did.