Symptom list

Thanks. I sort of have the opposite problem. I’m in disbelief that all of them could be made better with one surgical fix. I guess time will tell:)

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Most definitely, SewMomma :blush:

Thanks for sharing - it’s reassuring to see the similar symptoms. I’ve recently had my voice cutting out too. It really is tiring and heightens my anxiety. It’s amazing how many issues these little bones can cause!!

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It is pretty amazing, Mafre. I’m ready to be rid of them. I also forgot to add severe fatigue. Sometimes that is actually my worst symptom…hard to believe I forgot to add it!

Hi @redbird773 yes cognetti went as far back as he could to skull base. But he said he leaves a little on everyone bc he doesnt want to risk hitting facial nerve thats at the end. I freaked out when i woke up n he told me this and started crying bc i thought it was going to grow back. But then in post op he said he does it on everyone and hes never had a patients grow back so it made me feel a little better. I saw a lot of people had relief of jugular post surgery immediatley. Mine took about 2 months to get better but the heartbeat in ear n jugular never re-opened 100%. So i hope ur one of the lucky ones n it opens for u. Its def better out than in tho. I was so scared i woukd drop dead one day with those things in there. Thank goodness that fear is gone. My fear now is hoping symptoms never return it was horrible. Ur in good hands with dr samji and i found if you try to keep calling and saying how much pain your in they may get you in a little faster. I had to wait one month from appointment-surgery and i thought that was forever i kept calling but they said he only operates eagles 1x a month so i had to wait. But hopefully samji can get u in asap! Let us know how u make out :two_hearts:

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Thanks! I just want the surgeon to use good judgement regarding whether or not the entire thing should be removed in my case. Seems like the more experienced Eagles surgeons will play it by ear based on the particular situation and what things look like when they get in there, which is what I’m looking for. I had a surgeon in Texas who was rather rigid in his thinking and that scared me off. Glad to know your jugular issues eventually improved…at least somewhat!

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This post is one of those that blows my mind. I had so many of these symptoms and just went with it. Until you encounter ones that cause pain or disability you really just have to move on. I must say I do yawn a lot less and I have been an excessive yawner forever! I used to get in trouble for it in middle school! Perhaps when my ligament was starting to calcify!

I’m in a lot of pain at the moment. @redbird773 I’ve been reading your list of symptoms as in the last week I’ve been having severe pain in my chest (it’s not heart stuff or reflux as I’ve been for examinations) - it feels like something is twisted in my throat or sometimes feels like it could be deeper in my lungs or down to my stomach or something, it shifts throughout the day. Does this sound like the chest pain you encountered? And @SewMomma, I recall you writing about a clicking sensation, was this in your jaw or throat? The pain in my chest seems to come with a clicking sensation in my throat. As I mentioned it constantly shifts and I’ve noticed my ES area is quite painful once these sensations pass. Anyone had a similar sensation?

Hi! The click was upon each and every swallow. It was/still is either the ligament or my hyoid snagging on some cartilidge or surrounding structure. Can you sit somewhere quiet and put your hands up to your throat and swallow while feeling and listening? Mine could be heard by others from the outside. My left side remaining click is so faint you can feel it kind of twitch/pop up close to my ear when I swallow.

How is your quality of life? Are you still able to do things you like doing like cooking?

Hi @Mafre, sorry to hear that your pain level is intense today. I do get a similar feeling in my chest but it seems to involve my neck as well. There are nerves that run through the neck (near the styloid) and down into your chest. It all seems to go together. Sometimes I do get a nerve pain shooting to my heart, lungs, and into my intestines, but it usually stays in my chest rather than traveling all the way down to my gut. Photos like this make me understand how I could have so much pain everywhere that stems from one irritated place in my neck.

I also get a clicking in my throat due to my hyoid bone. It’s not audible to others though like Sew Momma’s is. But it causes food to slow down in that spot and it causes pain. I believe (and hope) that this bone will automatically relax when the tension is relieved in the ligament that connects the hyoid to the styloid following surgery. My first is at the beginning of April. Wish me luck!

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Great diagram! :+1: Yes I concur, my hyoid was/is being held hostage by the ligaments and is almost compeletely at a good position. Soon!
So you’re on Dr. Samji’s schedule? Did you have a phone consult with him? So excited for you!

Thanks. I am set for Dr. Samji on April 1. We did have a phone call. I think it went well. He said I am a candidate for both sides. We talked symptoms a lot. I was well prepared with typed, highlighted notes. So glad I did that. I think it made our 30 min call more productive for me. I ran down my symptom list and he said he would let me know if there was anything that definitely did or did not sound consistent with ES. He didn’t think my ocular symptoms were related which is disappointing. But he seemed to recognize the cardiac issues were common and asked if I had a cardiologist before I mentioned the symptoms. He sounded confident that he could fix my tinnitus issues. Didn’t want to get into detail about the hyoid bone involvement, so I sincerely hope it fixes itself with the ligament tension release. I read in one of Del Gaudio’s papers that this can occur since it is a connected complex.

So I’ve bought the plane tickets…just looking for a good place to stay with a recliner in San Jose. :slightly_smiling_face:

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Awesome! And do you have a recovery partner that will be accompanying you?
I love the peek into your conversation. Thank you for sharing that.
If if this doesn’t prove this whole diagnosis can be sometimes topsy turvy…I don’t know what will: The research you mentioned about hyoid involvement - that doctor is the one that discounted my click and sent me away virtually in tears. How can that be? I ponder the same questions as Headcase does about contradictions in our ES journeys. after the resection, I couldn’t make that click happen when I swallowed if I tried all day. Trust me…I did try :crazy_face:. Anyway, my takeaway is - have the surgery and hope for the majority of symptoms to go away. Worked for me!

Thanks both for sharing your thoughts and stories and thanks for the excellent diagram, it’s really fascinating and makes a lot of sense with symptoms. Great that your making progress @redbird773 with Dr Sami. His name pops up a lot. Is he like the superstar of ES surgeons?
It looks increasingly likely I’ll need surgery at some point :frowning: - I’ve been referred to ENT to discuss next steps but it’s taking a long time to get an appointment.

Great. So glad to hear your maybe not related symptom has improved!! One thing I really liked about Samji was his open mindedness. He said that people often report “strange” symptoms not typically associated with ES and sometimes they get better. So he did not say “absolutely not” to anything on my list. Obviously, everyone is unique. But that’s why I think it’s important to talk as much as possible about our symptoms. If I went by just what is most often reported in the scientific literature or on the medical media webpages, I’d be scratching my head…there’s so much more that bothers us that they don’t mention. They don’t have ES, so (in general) they just repeat what other papers have reported.

My mother is traveling with me. She’s the best for babying me, lol. No one makes better chicken rice soup.

I first learned about Dr. Samji on this site. There are several in the US. I’m told he makes every effort to remove the entire styloid, decreasing the odds of having the styloid re-grow and reducing the chance of lingering symptoms related to the upper portion of the styloid (which some surgeons leave and patients don’t always get full relief). He told me that he’s done about 300 ES surgeries now. There are a couple more in the US with about the same experience level though if you’re not close to CA. I hope you can get the help you need. It feels like it’s beenna long road for me but not compared to many. No sense in suffering endlessly though.

And the cooking hobby? :wink:

I don’t cook much lately…I rarely have the energy. My mom has been bringing food every week for a few months now. I thought she was awful when I was a teenager but she’s not too bad;)

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Red bird:
Have you had any mris done with gadolinium?! I’ve retained a high level of gadolinium some 9 years post last MRI with gadolinium.
since 2014 when Dr Cognetti removed my thyroid (cancer HRAS Codeon 61) as well as my left styloid, I’ve found out I also have the following conditions:
Ankylosing spondylitis, neurogenic thoracic outlet syndrome, and a nerve sheath tumor at C-5-C-6 level as well as a tumor in my throat at the level of thoracic INLET!
In urge anyone who has had even just one MRI with gadolinium to get tested to find out if they have retained gadolinium. Some friends in another support group have also developed all it some of what I have, I think it’s all relative!)
If you need testing info let me know!
Cat
PS:

I am anonymous patient #3 in both patient studies in above link, I’ve done five chelations so far but ran out of money to travel for treatment. I still have high levels…Cat

Hi Cat,
I am scheduled to have a brain MRI with contrast this friday. I had an MRI with contrast done 6 months ago on my neck. Now I feel a wave of anxiety over this revelation that the contrast may not leave the body.

Odd symptoms:
I came here today to look at odd symptoms of ES and one of them is the odd “taste” sensation from within my body, like the taste that you get when the contrast for an MRI enters through an IV - I have always describe the “taste” as metal like. I still have that sensation of “taste” on occasion. I thought that maybe some fluid was leaking somewhere.

My other odd symptom is the crackling in my neck when I move my head - mostly in the back of my neck and at the base of my skull. I can best describe it as the sensation similar to the candy “pop rocks” when you put a small amount your mouth. I used to describe it as a squishy sound but pop rocks is more what the sensation feels like. I’ve mentioned the squishy sound to doctors and we all know that didn’t go well.

On my recent visit to my primary care physician I talked to him about ES. He did not now of ES and looked it up. He believed that much of what I feel can be attributed to ES - INCLUDING my heart palpitations. He said that the carotid artery can transmit information to the heart. If the carotid artery is compressed by the styloid it can send information to the heart, hence the palpitations. (I may not have this information correct but the idea is right)

There have been some here that discussed the correlation between ES and stomach issues. I too have stomach issues that come and go which may or may not be related. I had an endoscopy - fortunately there was not much damage. I worked with a nutritionist on an elimination diet and got rid of the trigger foods, which mostly eliminated the acid reflux. Another trigger is anxiety. ES has been a huge source of anxiety and until I knew what it was, had me off the deep end at times with worry. Why is my carotid artery swollen and will it burst? Do I have lymphoma (as one doctor urged me to check)? . . .

ES is still a source of anxiety but having a name helps tremendously. I do meditation for 30 minutes regularly and it helps to relax. (I found a guided mediation online). This site is another wonderful resource. I am grateful for every new day.

All the best,
Theresa

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