Heya friends 
I need help. I should probably start a new thread. I am falling to pieces
(Re: health- I have been checked for absolutely Everything - I have so many more scans I am overwhelmed. It looks like possible autoimmune issue in my gut… I don’t know.)
I have been having a really difficult time. (Thank you Snapple for being willing to let me vanish then get back in touch).
I have severe pain from ES (started May 2016). I wasn’t diagnosed with ES until November 2019. (Not nerve type pain except around my left eye. I have tried every nerve medication and various nerve blocks.
The only thing that helps is opioids, and if those work, I can concentrate on alternative therapies to help… mindfulness, meditation-acupuncture…exercise)
I don’t know why ES affects me so oddly. Constant ear pain like a really bad earache, facial swelling.
My left sternocleidomastoid is frozen ( factoid: causing the sternocleidomastoid to spasm via injections is used in illegal torture 
)
I can feel the styloids growing on both sides. Under my ear just by my jaw - I am sure the styloid bone is poking there. Just touching it makes me vomit.
I was so excited to be diagnosed and referred for surgery. But now after reading everything there is no way I want intra-oral. With COVID-19, I have read so much on ES - Not the “traditional quick Google search ES” - I just KNOW in my heart that is the wrong approach.
I have been planning on a consult w/ Dr. Sanji… I wish more than anything I could have him do my surgeries. I have been trying to see if they take any Medicare Advantage plan. But, even if I had the insurance- I don’t know how I would get there.
Every time I see my specialists I can tell they don’t have a clue about ES. They all do the Google Dance and wonder why I am even in pain. Even with COVID-19, they all want to know why I don’t pop in for a bilateral tonsillectomy and bilateral styloidectomies and get better in a week.
I have questions but am too emotional right now. I am also dealing with a dislocated TMJ, vision problems (Depth perception), and just 2 weeks ago got my foot caught in a grate, twisted my knees and fell. Hard. Dislocated kneecap and need an MRI for torn MCL.
My biggest problem is that ES is getting worse, I have developed a tolerance to opioids- I have not increased in 4.5 years- and now can hardly get out of bed.
Apologies- I know everyone is going through so much- I just want to say I really really understand. I have not been able to even log on to the forum because I get upset- WE ALL KNOW ES, but our doctors don’t. Hugs
Sleepless in Seattle
Gwen
2 Replies
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Oh Gwen, that sounds really tough, my heart goes out to you…I’ll be praying for you that you can be out of pain & for answers. God bless, & gentle hugs from me 
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shayneyRegular
Reading your story is heartbreaking. This ES thing just plain and simply sucks. I pray you get relief soon. Hugs to you.
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Gwendolyn
Hi Gwen,
Because ES can severely impact the vagus nerve, & the vagus nerve innervates much of the gastrointestinal tract, there is a possibility (not diagnosing here) that your “autoimmune gut issue” could be coming from vagus nerve irritation & would dissipate once your styloids are outta there & no longer bothering your vagus nerve.
Your SCM is issue is likely coming from your accessory nerve being compromised by ES. We have had other members w/ similar problems to yours.
Dr. Samji does take various Medicare plans but Medicare requires ES surgery to be done in the hospital (not outpatient) w/ an overnight stay. We’ve had a couple of members who’ve come to have him do their surgeries in the hospital since the COVID SIP started, & who’ve had no ill consequences from doing so. I do understand that your dilemma is more the difficulty/cost of traveling this far then dealing w/ staying here for a week for pre & post op appts.
I will also be praying that your current physical issues will stop preventing you from being able to pursue ES surgery as I think that alone will begin a new cycle of healing for you.
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Hi,
Replying to everyone- first - Thank You! I didn’t realize how much I needed to just write some things down.
I have thought that the whole autoimmune theory is wrong for quite a while. I remember reading- maybe it was Jules? - that the doctors kept insisting that she had An autoimmune vascular disorder, but it was really related to ES.
Right now my diagnosis is incorrect- lol - glossopharyngeal neuralgia, even though I don’t have “ sharp, jabbing pain deep in the throat, or in the tongue, ear, and tonsils, lasting a few seconds to a few minutes.” (I wonder if Medicare views that differently.)
The above is an example of what happens if a doctor writes a visit note. Even if I write in to say - ummm… no… I don’t have these symptoms- if a note isn’t corrected then it becomes the “Word of the Almighty in Medical Land”.
Off topic- but I also feel like all I have been doing this year is attempting to correct visit notes without success. Health providers never seem to actually write down what was discussed. Then the next provider reads the notes and tells me that I am wrong because said notes are in my file. 
I actually put a PowerPoint presentation together to show my doctors what I am experiencing- and cite articles. They understand what I am saying and then promptly forget it.
Back to Dr. Samji: I am at the point of trying to figure out how to go down there. Snapple had such a great experience!
Question : If I have a new CBCT scan (the 3D CT) and sent it to him, would he be able to see if the styloid bone is actually poking into the area under my ear? Do scans show where the styloid bone goes? (Ex: in the tonsillar fossa, etc)
I read that there might be a great surgeon in Portland, so I have wondered about that.
I still have left ear infections, which exacerbate the ES. Or, perhaps it exacerbates my TMJ. I can’t tell if I have one now.
I can not seem to get through to my doctor- if I am in too much pain I can’t move. If I can’t move I will not be able to go get all these tests they want done. Last night my face was so swollen I couldn’t speak. It happened again earlier this morning - not even able to get an ice pack.
My mom made a great point- I have to be having a relatively good day to see the doctor- therefore they never see me feeling how I really feel.
I have questions for a new thread about surgeries I will post.
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Hi Gwen,
First off, Dr. Samji doesn’t need a 3D CT scan. He prefers the slices as he reads the scans & measures the styloids/calcified ligaments himself. He doesn’t trust what the radiologists say in that regard. He wants a CT without contrast as being able to see the soft tissues makes the styloid, etc., less easy to visualize & measure. If it’s been awhile since you had your CT then an updated one would be good. If you’ve had yours w/in the last year, it’s probably current enough. He will want a hard copy of the CT + the radiology report.
Whether or not he can see if the styloid is poking into the area under your ear, will depend on the angle of your head during the CT scan & the angle of your styloid(s). If it is the styloid(s) you feel, then it would likely be because it’s very thick. It’s unlikely that it would angle in that direction. I have a hard area beneath both ears that I was sure was styloids. Both are still there, but I’ve recently found out that there are ligaments in that space & mine are very tight & contributing to the ringing in my ears & some facial pain, so I’m getting that worked on via massage & acupuncture. Those therapies seem to be helping w/ the tinnitus
You can schedule a video/phone consult w/ Dr. Samji (Yerelin@caminoent.com) so you wouldn’t have to leave home so if you were having a bad day, it wouldn’t require travel. I think the surgeons in Portland area all do intraoral surgery, but it would be worth your time to check as going to Portland would certainly be closer for you.
I hope this info helps as you make your decision abt how to move forward.
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Should we move the more recent posts to a new thread?
Thank you for the information , once again my friend! This is long, but everything is very important, please bear 
with me. Semi pity party. 
- What if all I have is the 3D scan? Will he review those? I had one done last October, but I feel like it has gotten much worse. I wonder if I should ask my doctor for a CT without contrast. Would that just be the entire head/neck?
I have had around 5-6 CT scans over the years, but they were focused really close to my mastoid so I know those scans will not work.
- It makes sense that it could be a ligament. It is beneath my earlobe, but just under where the jawbone starts. I will attach a picture.
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