I had an appointment with a neurologist yesterday. Frustrating at best. He dismissed my swelling as “nerves transmitted the feeling of swelling.” A FEELING?! I felt like he was telling me it was all in my head. He also said that ES has nothing to do with it. UUUGH. In the meantime pain is getting worse. The ear and tooth pain wakes me up at night and the pressure in my ears is making the ringing in my ears off the charts. I want to pull my hair out. Meditation helps.
Back on topic. My PCP found the full publication by Dr. Cognetti in which it lists symptoms they use for diagnosis - with the pain level to be noted as: “0 -no problem” up to “4 - problem as bad as it could be.”
The symptoms list:
neck pain
neck swelling
ear pain
ear fullness
ear ringing
eye twitching
tooth pain
nasal congestion
painful swallowing
difficulty swallowing
sensation of something stuck in throat
sore throat
facial pain
headaches (not migraines)
tongue protrusion
yawning
head turning pain.
That’s quite a list and we all know there’s more. For me its all except #15 and 16. Plus an added symptom of muscle spasms. I would say that the pain levels range from 2 at best to 4.
(On a side note, as a woman you would think that I would be used to being dismissed. I work in a male dominated field and have to push all of the time to be heard. For all of the men here who have struggled to be heard, you now know how it feels.)
That’s a really interesting list, thanks for sharing it; I’m amazed that some of the symptoms are recognised, like nasal congestion & eye twitching. Lots of doctors only recognise the pain swallowing or pain turning head.
Sorry though that your neurologist wasn’t helpful- did he not suggest any medications for the nerve pain, or have you already tried them (sorry, can’t remember)
Lots of us will understand how frustrated you feel, big hug to you…
Go Dr. Cognetti! A much more realistic list then we’re told by most ENT’s. My ligaments caused/cause me: ear pain, ear fullness, ear ringing, tooth pain, difficulty swallowing, sore throat especially when I sneeze, and of course…the click.
Thanks for the hug.
The neurologist did suggest medication starting with Gabapentin first, then try Lyrica, then Elavil if needed. The side effects from Elavil sound worse than ES. I have not been on these meds but I have tried steroids and a month long course of indomethican in thinking that it would “break the cycle of pain” - neither of them helped. I will try the gaba but not keen on the other medication. I take cyclobenzaprine at times for the knots left behind from the spasms but it doesn’t always help - I mostly just feel foggy and tired. Ice and heat work best on the knots.
My ENT surgeon said that it usually takes years for a diagnosis, from the point where this became chronic it took 4 months for my diagnosis by CT scan with contrast. In retrospect I had many symptoms for several years before - ear and tooth pain (must be a dental problem), trouble breathing (oh, must be a sinus problem), sore throats without colds (oh it must be seasonally allergies), food getting stuck in my throat (ok, that’s weird), headaches (oh it must be stress - stress for everything!!)
I start with gabapentin tonight. I hope it helps. I’ll keep you posted.
Shaking my head here. Took 10mg of Elavil for a month then d/c’d it on my own. I suppose we do these things mostly out of hope to not have to have surgery but also to pacify our doctors who want to start with prescriptions.
For what it’s worth, we do have a forum member who recently had resounding success w/ Gabapentin for post op ES pain that never resolved. She took it for 3 months before getting results but says it gave her, her life back.
I must say, though, that I agree w/ SewMomma’s comment - Rx meds only help delay the inevitable - surgery - which is the only cure for ES.
Are you able to consider traveling outside of your state to have surgery? Since you really haven’t found anyone local to you for that, it would be an option. I think it’s been suggested that you could at least get a second opinion from one of the more experienced doctors on this forum via a phone consult. Worth considering at this point.
Hi Isaiah,
I am in the process of getting copies of my imaging so that I can get a consult with Dr. Cognetti in Philadelphia. It’s about a 2-1/2 hour drive from Brooklyn. Ideally I would like for him to do the surgery but my insurance does not cover out of network. Hopefully the insurance would accept the surgery out of network due to the rarity of ES. The surgeon that I have been “working with” has done 3 surgeries in his career. I say “working with” because he keeps shuffling me off to other specialist. To start the surgical process I would have to have my current surgeon recommend the surgery so that I can start with insurance approval, then try to convince them to go out of network.
One step forward, two steps back, but I will keep looking forward.
I am so grateful your support and input - to all of us here.
Have a great weekend.
I’m relieved to read that you’re being proactive. I will be praying that your current surgeon will make the referral for ES surgery especially if you request him to do so & that your insurance company will approve an out of network doctor. I know insurance can be a bit tricky to work with. I hope those imaging copies come through for you ASAP as well.
I also hope you have a good weekend - as ES symptomless as possible! Take care of yourself.
Hey BrooklynGirl,
Brooklyn Guy here with a similar situation.
I have made the trip down to Dr Cognetti (if traffic is ok, its only 1:40). He is by far the most knowledgable surgeon in this field to be working with. Like you, I am also having insurance issues though I’m hoping I can opt in to one of my employers plans that are in network. The loophole is to create a ‘qualifying event’ and then you can opt in. I’m very curious to hear if your insurance would indeed consider going out of network so keep us posted please.
