Hi! New Member here...long story hope to feel understood!

General
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Hi, I am very new to the world of ES! But I am not very new to the problems it causes. I have a lot of traumatic injury that happened to me before the ES but I think the most relevant was the cervical disc fusion of c5-c6 in 2015 and cadaver bone was used. In 2016 I started having issues that I just checked off to my body recovering from surgery. And then the problems became worse. I went back to the surgeon and she did a CT scan and said all was well and I was just healing. Then the trips to ERs started. One was esophageal spasm. I thought I was having a heart attack! My body is VERY sensitive and even with really good explanations it was passed off as heartburn. BTW, my heartburn had increased but it was due to some medication I was on. So, I am pretty sure I had a zenker’s diverticulum as well. I could feel a soft sensation of touch down where I swallow. And it would burst and refill with junk, especially if I was drinking a lot of soda…the bubbles…OH, I forgot to mention that my tonsils have been bad my whole life. So a bunch of infection that I figure the issues I am having are related to. Then one day I lost my voice. I started coughing and wheezing…I could FEEL that I was inhaling misty liquid! I could not swallow on my left side. All of my meds got stuck. Food too. At that time (2017) I knew someone who had salivary cancer and they found it late. She died! So there I was and then my salivary glands started hurting and I had no saliva. Went to the ENT and he tested for Sjogrens and said I did not have it. But he had no other answer either. My mouth and tongue started burning. I had weird pinpointed pain in my neck/throat area. I have had it feel like someone is strangling me. That is when I started to get really scared! I have also cleaned my tonsil out and suddenly a flare…crazy spreading pain to my ear, cheek, cheekbone, jaw and behind my eye. Now I am more scared! My last brain MRI for the neuro said my brain had issues not normal in a person my age. I didn’t get to see my Neuro because she eventually said I don’t know what I can do for you anymore! OH, also diagnosed with Dysautonomia and autonomic neuropathy . I also have Fibromyalgia. I have a list of symptoms somewhere and I have journaled a lot but need to find the notes. I will share one with you all.

3/16/2019 Woke up with horrible pain in neck near voicebox. Swallowing makes it hurt worse. Feels like someone put their hands around my neck and squeezed. My salivary glands are swollen and very painful. Also the pain radiates and gives me a wincing pain in my ears. This affects predominantly my left side but also happens on right to lesser degree.

So, since I started seeking help in late 2016 early 2017. And all I have gotten is that I am “one of them”. Meaning, I am only seeking help from ER and Dr.s for medication. Which is so not the case because I already have one and it is contracted and I am not allowed to ask anyone else for it! But the ER people love to ask me over and over if I need more pain meds even after I have said no numerous times. I have pictures of my face blown up on the left side which I will share. I have a very long list of symptoms, which I need to find again.

I was laying in bed the other night in excruciating pain and I decided to touch it. I put my finger in the back of my mouth and touched the end of my L styloid. I can also feel the right but it is back further. This is the night I realized tonsils do not have bones and I started researching and found my way here!

So I am scheduled to have my tonsils out Nov 7. I just alerted my ENT a couple days ago that I thought I had ES. They said they would pull my CT from 2017. I got called back today. She said for me to come in 20 minutes early to pre-op appt so Dr could talk to me. I said WOAH. WAIT. A. MINUTE. I asked if he saw what I saw on the scans, referring to my elongated styloids. She said he refused to say what that was. They want me to go through this surgery WITHOUT a new CT scan for tonsil surgery and my tonsils now have the bones through them and I can touch them in the back of my mouth??? I said what about the Neurological concerns I have??? That is what the extra 20 minutes is for…I’m sorry, I don’t think so. Now I feel like I am just a Dr.s boat payment!!!

I am so tired. I can so feel all of this. And it is MY belief that the different symptoms I have had are because the bones were growing and therefore affecting different regions of my head, face, neck, jaw, salivary glands, tonsils, and so on and so forth. I am TIRED. I am tired of not being believed when I try to get help. I had my kids without pain meds…If I tell you it hurts or it is excruciating, it freaking hurts!Right now my mouth and throat and toungue burn. My jaw is killing me. I can feel the bone in my tonsil. I had to leave a job because of this. I have not had a very good quality of life because of this. I understand why TN is called suicide syndrome because I also get TN pain and I am in the shower CRYING. I called the Neuro, who on our last appt she said she had nothing else for me, and I made an appointment and begged the girl that made the appt to tell her why I was coming in. I am hoping I mean enough as a patient for her for a new CT scan. She had referred me to Mayo a long time ago but I couldn’t afford it and she didn’t have a grip on my symptoms anyway. I have a three year old Grandson and he is the reason I won’t give up. But I’ll tell you what, some days it is so bad…why do Dr.s not believe us??? I so know my own body!!

I also have a bad taste in my mouth…I can taste sickness. I think the bone and tonsil make a nasty little pocket where germs just go crazy! Also have hair and nail changes and skin changes too…and I am already through menopause so I feel it’s something new.

I have back issues and Fibro and I feel like everything flares up at once. I saw someone else felt that way and I wanted to tell them I agree. Sorry I forgot your name!

Sorry if this is all scattered. I am about to find all of my journal papers (and my FMLA papers when I did work) and type out the long list of symptoms again for the Neuro visit on Monday. I really hope she listens. I am tired of being dismissed as “one of them”.

You can see how pasty I have become in the time frame of maybe 6? months?

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Edited by Isaiah_40_31

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The CT looks like at least one side there might be calcified ligaments as well as possible elongated styloids, both can cause symptoms.
The choking/ swallowing problems are classic ES symptoms, & the nerve pain, but some of the other symptoms can be possibly related to ES. Most doctors don’t recognize this though! I’ve had similar salivary gland problems & have a dry mouth & eyes, tested negative for Sjogrens too, but I believe it’s related as the symptoms started at the same time too. (Sadly lost my best friend from school to salivary gland cancer too)
It might be worth you postponing the tonsillectomy for now & looking into surgery for the ES; if you were able to have surgery & had introral then they would likely remove the tonsils anyway, although there’s a risk of infection with this surgery, so possibly if your tonsils are a mess post op infection could be more likely? Something to ask…If you have a look at the Doctors list in the Doctors Info Section, it might be possible to be referred to a doctor more experienced with ES if you’re not confident with your ENT. You’ve been on such a difficult journey, so it’s worth getting the right doctor now tgat yiu have a CT showing calcification.
Good luck!

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Thank you for reading my story and for the feeling of validation! I am absolutely post-poning my surgery! If all I am worth to the ENT is an extra 20 minutes on the subject…I had to beg them to give me an appt with him before the surgery. If I was a DR. I sure would have a brand new CT scan in hand to see what has changed! And yes, the R side is affected because I can feel that bone in my mouth as well! Again, this CT is from 15 months ago. I know it has changed!

Again, hen I find my notes I will write down my list of symptoms. The hard thing is recognizing what is caused by what. I just hope the neuro takes an interest in this new info and helps. I am so tired of being sick.

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Does anyone else experience the swelling that I have shared in my picture???Standing upright it was the same…not jawbone and all on one side. Also, Ladies, I notice that I cannot wear a bralette that is just looped around the neck…it makes some of my symptoms worse and I am guessing it is pushing stuff around and flaring it up.

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Hi dharmadel,

I agree w/ Jules assessment & will add your styloids look very thick to me. Thickness adds another potential to the symptoms dimension in addition to length.

Most of the symptoms caused by ES come from irritation of one or more cranial nerves. Six of our 12 cranial nerves are often affected by ES though not all 6 in each person. In your case, your accessory nerve is likely irritated which is why your bralette is uncomfy. That nerve affects your shoulders, upper back & arms. The vegus nerve is almost always irritated by ES, & its irritation causes many symptoms ranging from skull to throat/vocal cords to heart to gastrointestinal system. The trigeminal & facial nerves are often irritated. The trigeminal nerve alone can cause eye, jaw, teeth, cheek & other facial pain. The facial nerve affects facial expression. Glossopharyngeal & hypoglossal nerves affect tongue, mouth & throat & can create pain & dysfunction there when irritated.

I’m not a doctor, but it sounds to me like you have quite a few irritated cranial nerves. They exist in the neck in the area of the styloids & thus when the styloids are misshapen or too long &/or the stylohyoid ligaments are calcified, they wreak havoc on the nerves which they contact.

We’ve had several recent members experience neck, jaw & lymph gland swelling as a result of nerves irritated by ES so what you’re experiencing is not a common symptom but not unheard of.

I think you’re making the right decision to put off your surgery. When you see your neurologist, don’t give her the long list of symptoms you have. Talk to her about a few of the worst ones & request a new CT scan. Look up the cranial nerves I’ve mentioned & even pictures of where they run in your body. I think you’ll feel very educated & can even tell your neurologist you’re pretty sure of the cause of many of your symptoms - cranial nerve irritation. Neurologists should know what these nerves affect in our bodies, but all too often, even they don’t seem well informed in this arena.

Here is the link to the US ES Doctors List - US Doctors Familiar With ES, 2019
Find someone on there & make an appointment. If you don’t get satisfaction from that doctor, you can make a phone conference call appt w/ one of the very experienced ES doctors on our forum - Dr. Samji (CA) or Dr. Cognetti (PA). Mayo clinics have rarely been helpful w/ ES patients (except in Phoenix, AZ).

I hope this helps!

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Thank you so much Isiah_40_31! When I made the pictures to share of the styloids, YES under a different angle they are very , very thick! I didn’t know if that mattered and boy oh boy I guess it does! I will have to make a picture that shows just how think. And again, that is a year and a half ago. Thank you for the advice on how to approach the Neuro, truly, I either say too little or way too much! I want to be heard smarter if that makes sense. I actually have an infection in the pocket that the bone on L and tonsil make and it is messing with my hearing/ear. GP can’t see me until Wednesday. :frowning:

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Edited by Isaiah_40_31

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I often get a stabbing right behind my jaw under my ear. It is extremelt painful!

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dharmadel,
I’m sorry about your infx & do hope it resolves quickly w/ antibiotics. I also hope your Neuro jumps at the opportunity to offer you another CT scan. Please let us know how that appt goes.

I had the stabbing pain under the ear as a symptom from ES. Again, it’s one of those cranial nerves complaining. They are such fuss budgets when irritated!!

I will be interested to see the pic of the scan that shows your styloids from their thickest angle.

:relaxed:

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I forgot to mention…I am 51 years old…how much does that play into recovery time? Neuro appt tomorrow.

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Others have been through surgery at that age, don’t worry! It’s not exactly advanced! (I’m 50, have got to say that :joy:) I was about 45 when I had mine.

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I asked because the ENT and his nurse kept telling me how brutal it will be like they were trying to scare me out of it! Neuro tomorrow and ENT Wednesday that I had to demand because, again, I think this requires more than a 20 minute chat before surgery. I am sorry to everyone if I am being super negative. I am not trying to be. What I have been through is terrible. Please send me positive energy, y’all!!!

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Here’s to you, all of the positive energy, I can muster up is for you! I am currently undiagnosed after many years of same complaints documented, but very hopeful that in less than a month I’ll be official… To you I say (shout) I hear you, I understand what you are saying, I non-medically validate your symptoms, I ABSOLUTELY believe you and I BELIEVE IN YOU. Keep advocating for yourself. Every time you get down or that pain feels unbearable, look at the pictures of the grandbaby and know you must fight on! These people have given me so much strength in these months since I found the link and I thank them everyday! I have true friends, but felt alone in this pain, then I found strength in numbers… The Syndrome is not as rare as I believed six months ago; however, the members, short and long term, are rare and truly beautiful in so many ways! I am older than you, but have been symptomatic most of my adult life, but no one can talk me out of surgery if I get the official ES diagnosis next month. All of those who spoke before me gave the great advice and I agree, please short-list your symptoms, it works.

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DeeG, thank you so very much! Thank you for the validation and for understanding where I am in my journey! Yes, my symptoms are well documented as well. I have Dysautonomia and Autonomic Neuropathy and then Dysphagia and throat/voice/mouth issues and I get one heck of a huge infection in my face/neck. I think this started in 2016 but I also had symptoms in 2012 and sometimes I also wonder how long I have had it. No one was being alerted to look in the right place and I realized that I was the only person advocating for myself and I am hoping I also have the missing puzzle piece! YES, I will def short list, I got up early to do just exactly that. I am also taking my Dad and I feel so thankful that I still have both of my parents! I am so grateful to be here on this board. And YES, I do look at my baby or ask for him to come over when it is bad because he makes it bearable when I feel my worst! Thank you!

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Hi dharmadel,

I was 58 when I had my ES surgeries. My second one was actually shortly before I turned 59. From what I’ve seen on this forum over the last 5 years, my recovery time was no longer than for the younger folks who’ve had ES surgery. There are a rare few, regardless of age, who basically recover in a week or two, but for most it takes 6-8 weeks for energy to come fully back & 6-12 months for full nerve &/or vascular recovery. Your doctor is misguiding you.

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Thank you, Isaiah_40_31, I am glad to be here and have the opportunity to ask people who have experienced this! I would rather have a long recovery than to keep dealing with this. I will brace myself. Now I just need to learn if this Dr. is even going to address this or if he just wants to remove my tonsils. I am heading over to your other question on my other post.

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