Symptom list

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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You might need to rethink that appointment, ultimately it’s up to you but most of symptoms are what we have been having, including a buzzing inside the body!”
Please go to that link above then get tested for what your levels might be, if you’ve retained any. Note that your docs will deny this happens, don’t let them! Pcp can write RX to order the list here: www.mayedicallaboratories.com look under G for tests by name alphabetical listed, the draw and 24 hr urine tests are done usually at hospital that has account with Mayo as it’s done as a send out. Takes almost two weeks for results, I always picked mine up before I went to
See ordering doctor so I’d have questions prepared ahead of time.
Why add insult to injury, so many people including Chuck Norris’ wife Gena. Google what she has been through going around the world for her care. We are poisoned no one cares please don’t harm
Yourself any more. Whatever is wrong with us can be taken care of via ct etc.
Good luck!
Ps: if it’s easier to talk call me at 732-■■■■. I ammon NJ

I also forgot to mention one of the things affecting a lot of us who’ve retained the gadolinium, is thyroid disease (I’ve had mine removed as it turned to cancer despite having had radioactive iodine ablation in 2005, cancer discovered in 2013 removed 2014)
Retention affects the entire body’s systems, as it causes fibrosis which is scarring. Stomach issues happen first The it cascades to rest of body. Call me so much easier than typing for me!
Cat

Hi Cat,
Thank you for your quick response. I am definitely rethinking that appointment. I don’t have any thyroid symptoms but some of the gadolinium issues seem to overlap with ES. My styloid processes are 3.7 cm and 5.1 cm so its ES for sure. (the shorter one is the one that is causing the havoc)

Hi redbird773!

Thank you for this amazing picture. It will help everyone on this forum who takes time to study it! I just put it in my ES folder on my computer desktop for future reference.

I’m also glad Dr. Samji was supportive of you discussing your symptoms. From what you’ve said, it seems he’s been really listened to his ES patients over the last 5 years since I had my surgery & better understands now how diverse ES symptoms can be. To that I say, “HALLELUJAH!!” That’s the sign of a good doctor!

I don’t fully agree w/ him regarding your occular symptoms, but time will tell. If they disappear or your vision improves post op, then you’ll know ES did play a role in that problem as well as your other symptoms. Please keep in mind that since you have bilateral ES, you may not feel complete symptom relief after your first surgery. Many people think this means their surgery didn’t “work”. That’s simply not the case. It only means you still have a bone/calcified area that’s continuing to cause problems which should mostly resolve once you’ve had your second surgery.

I’m so glad you’re on your way to resolution of ES & will hopefully soon be able to get back to doing the things you love in a body that’s free of ES symptoms.

:hugs:

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Hi @Cat. I’m so sorry to hear of these issues you have developed. I have never had to have an MRI, but I just saw a headache neurologist yesterday who ordered one. Although I am supposed to go get it done soon, I may hold off until after my upcoming surgery…mostly because she said she did not expect to see anything terribly abnormal in the results. How many MRIs did you have in total? I see the article you shared says all subjects had normal function. Out of curiosity, was renal function (GFR) checked in advance of the imaging? As I’m sure you know, the body can’t always differentiate between particular metal ions and this can lead to trouble with exposures that are in excess of a certain threshold that is different based on the type of metal and many other individual-specific factors. I think it comes down to a risk-benefit ratio. Fortunately, MRI is not the go-to method for ES detection and I haven’t had to make a choice about this risk until recently. I would likely not be afraid to go get one MRI if I felt it was necessary, but I’d have to think about subsequent scans a bit harder. I have said no to additional CT scans recently though because, generally speaking, the more you are exposed to something toxic, the higher the risk. Had more than my share lately! Thanks for sharing your article:)

@BrooklynGirl I’ve had the “pop rocks” thing going on in the back of my head now for a couple of months. So weird how it’s happening on the opposite side of our skulls! I wonder if it is associated with the muscle tension, which I think might be related to the neck pain but I’m not sure.

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I have all of my scans and reports in hand and now waiting for Dr. Cognetti to get back to me.

I have re-read the CT scan report where the ES diagnosis was reported. The left styloid process is noted as 3.7 cm and the right at 5.1 cm. The report also noted enlargement of the bilateral lingual tonsils.

My tonsils were taken out when I was in third grade so its obviously not my tonsils. Is the enlargement (and pain) consistent with ES diagnosis?

My major symptoms are on the left - the shorter of the two. I do feel the styloid poking on the right with some pain under my jaw. My fear is that Dr. C. will say it cant be the shorter of the two. I think this is my psyche bracing myself for someone else telling me its all in my head.

Peace to all.

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Hi BrooklynGirl,

ES symptoms really boil down to which styloid is poking in the “wrong place” whether shorter or longer. This can be caused by the curve or thickness of the styloid. I trust that Dr. Cognetti is seasoned enough w/ ES that he also has this knowledge. I’ll be very disappointed if he doesn’t validate that it’s possible for you to have worse symptoms on the shorter side.

In my case, my right styloid was shorter but much thicker than the left. It also was growing almost straight down, & though my symptoms were more on the left side, Dr. Samji was adamant that he remove the right side first. This ended up being a great decision as it turns out the ride side was causing vascular symptoms which I hadn’t recognized as such until the styloid was gone. Some surgeons will let you request which side you want done first if they don’t have a medical reason for choosing one over the other.

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When you have your tonsils removed I believe it is the palatine tonsils. You also have tonsils at the base of your tongue (lingual tonsils). Interesting that yours were enlarged. My ENT said the same about mine. Both of your styloids are plenty long enough to give you trouble. The shorter one is apparently just in closer proximity to a nerve. Best of luck with Dr. C!

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Interesting tonsils facts, redbird773. Thank you for educating us!

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Glad that the CT report confirmed ES, hopefully Dr Cognetti will be open to discussing your symptoms & which side you have done first…just be aware that after one surgery the 2nd side can seem to worsen, so you may not be completely pain free!
Good luck, & let us know how you get on!

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Thanks for that info, didn’t know that!

Looks like 3 types altogether. I never knew this until recently when the ENT explained it. Before I had an ES diagnosis, this (the lingual tonsils being inflamed and having what he thought was stones in them) was the only thing he could find wrong back there, but he hadn’t seen the CT and was just going be the radiologist ‘s report (which said nothing about styloids at all).

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