Symptoms worsening and insurance woes

Hello all of my fellow ES suffers.

As time progresses so do the symptoms. I have symptoms for years but they have been constant for almost 10 months now and are getting worse. The pain in my my neck with the feeling of swollen glands under my jaw and the pain in my cheek is almost unbearable. I used to have a reprieve from the severe pain in the morning - I think due to less movement of my neck through the night - but unfortunately that is no longer the case.

I also realize that I cannot cry - I mean I can, but the crying makes the neck pain and stuffiness worse - the poking pain was the worst. I am not one to cry but I was to the point were I had enough and the tears just flowed. We all need a good cry sometimes but I had to stop.

I am so ready to have this surgery. Dr. C’s office contacted me but the next available consult is not until May 15th. Not only do I have to wait, I am dealing with my insurance to approve out of network as Dr. C does not take my insurance. The new year for my insurance starts in May - and for all of you lucky enough to have universal coverage - it means that I start all over with my deductible adding roughly $3800 on top of what ever the out of pocket expense the surgery costs. (That’s on top of the $725 a month I pay for my insurance as a single person!)

It almost makes me want to go with the head/neck surgeon I’ve been working with but he is not experienced, though he said that it the surgery is not difficult. I need to be patient but it seems that I have reached my breaking point.

I thank you all for your support and for listening to me rant.
Peace to all.

Really feel for you, to have insurance & financial worries on top of the increasing pain you’re in is so hard, sending you a big hug…
I’m UK, so not familiar with the insurance issues (but I do understand waiting, I had to wait 4 months for my op, 7 months altogether for consults & CT…)
We do always suggest that people go to an experienced doctor if they can, as there’s obviously a better chance of good results & less risk, but a head & neck surgeon is a good bet- if he understands that as much of the styloid as possible & smooths the edges over, plus removes any calcified ligaments, then you shoukd have a good outcome. Obviously they’ll be used to operating in that area, so the risks are less- was it going to be intra-oral or external? How did you feel about the surgeon, did you feel comfortable & confident with them?
It’s a difficult decision, it depends how long you can wait, how confident you felt with the doctor & finances too…I wish I could give you the right answer, but I’ll certainly pray that the way forward becomes clear for you…


Brooklyn Girl,

I’m so sorry for the long wait to talk to Dr. Cognetti. Have you asked to be put on a cancellation list? If not, get on the phone & do so!! Waiting can be so hard especially where pain is involved.

I totally understand the not being able to cry situation. It seems laughing, crying, stress, fatigue, being sick…can all make ES symptoms worse. I remember going through that myself.

Also very sorry for your insurance issues. I know those can be tricky. We never anticipate having a major health issue especially not one “no one” has heard of. I’ll be praying your out-of-network request gets accepted so you can go to the doctor of your choice. Totally agree w/ Jules that seeing someone more experienced is a good idea.

I’ll be praying for you, too.



Isaiah_40_31 and @Jules
I cant thank you enough for your support. My coping mechanisms are not working - the constant pain is wearing me thin.

I am on a cancellation list with Dr. C. Fingers crossed. At this point I have asked my head/neck surgeon if he would call Dr. C directly and have a consult with him. Now waiting. There is a lot of waiting.

I’ll keep you posted.
All the best :two_hearts:

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Hi BrooklynGirl,

Perhaps the waiting now is cultivating the patience you’ll need during recovery post op. Though we get back to “functional” w/in a couple of weeks after surgery, there is a longer period where we need to really take it easy & let others help us w/ things we normally do ourselves. That’s HARD. We’re so independent, but overdoing really slows down healing progress.
I think waiting is hardest when we’re waiting for answers & for help w/ pain resolution. I’ll keep praying that all the pieces fit together for you to get your appointment ASAP & for your head/neck surgeon to be able to talk to Dr. Cognetti. It would be awesome for you to have better local support.

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