RedBird,
I had Nine in ten year span of time, but patients are retaining even after one mri with gadolinium, I also have 2 mthfr gene mutations said to allow body to retain metals. I have also retained eleven other metals, some in off the chart levels, despite having just one barium swallow etc. you can see these regulars in my Facebook pages
Catherine Nichols POGORZELSKI
My Eagle issues were found via plain Xray but I had to insist on it as Cognetti did not believer it could be an issue. When I told him, “humor me and order imaging” (via Xray only as he was well aware of my gadolinium retention issues) he almost scoffed and I git serious and said Do it and let’s see if I am right after all this time…and I Was right! He removed left side along with my thyroid cancer, no time to do right side.
Since then I have been diagnosed with Ankylosing spondylitis, neurogenic Thoracic outlet syndrome, nerve sheath tumor at C5-C6 level unsure if benign or malignant at this time. I also have tumor in throat at level of Thoracic INLET…
In us we have to remember that it may not always be just ONE thing… but if there is one thing I would never do it’s the injection of gadolinium as it IS causing fibrosis which is scarring of internal and external
Tissues. Even my bowel is affected. Two operations later…waiting on two more…
Be safe!
Hundreds of patients affected via retained gadolinium of course mainstream medical professionals don’t want to take responsibility!! Cases in courts as I type…
Thank you for bringing an awareness of this problem to our forum. I’m very sorry you’re having so many health issues as a result. I’ll be praying for the cycle of disease/damage to stop so you can get the known things treated & be done.
MTHFR gene mutation is a curiosity for sure. It runs on my husband’s side of the family, & I have a niece who has severe autoimmune disease as a result of having CC gene mutation. Her brother is OO & thus asymptomatic. Very scary. There are so many hidden things that can go haywire in our bodies. No one but God will ever know them all.
Hi @redbird773 - I’m returning to your helpful diagram yet again to try to explain new sensations I’ve been getting:
The underside of my jaw and top of my throat are really aching and as such it is uncomfortable to tilt my head down to read.
I’ve been having a sensation that when I breath it’s slightly strained like air is thick or humid and there’s very mild wheezing, my voice is breaking/gravelly (more the way it feels in my throat than a noticeable voice change).
The whole of my upper throat and where it connects to my jaw feels like it needs to relax but I can’t work out how to make it do this. Tilting my head back relieves it slightly but isn’t a long term solution as there’s only so many times one can look at a ceiling before it becomes tiresome. Plus it seems to make the breathing issue feel worse. At times, it feels somewhat like I’m suffocating.
You mentioned your calcifying ligaments are holding your hyoid hostage. My Styloids are poking into my throat next to my tonsils. Could they be affecting the hyoid as well? What’s your experience?
I’ve recently had gastroscopy, investigation of larynx, barium swallow and chest X-Ray and it all came back normal so I’m hoping that all these issues I’m experiencing can be fixed by correcting ES. I have an appointment with ENT in 3 weeks time - feels like an age away and I’m really worried that they’ll say my symptoms aren’t ES and then I’ll be none the wiser. Anyone’s thoughts on any of this would be really appreciated. Thanks.
Hi @Mafre, these symptoms are a lot like mine. Looking down is the most difficult head position. My styloids have not broken through my tonsil area but the left is just under the surface. The left side tonsil is bulging inward and looks different than it has the rest of my life. As far as I know, I don’t have calcification of my ligaments though, but we’ll see what Dr. Samji says. My pre-op appt is on Friday. My hypothesis about the crooked hyoid is that the ligaments are at different angles now due to the styloid growth (since the ligament is connected to the end of the styloid). It makes sense to me that if the top of the ligament is being pushed inward on each side that this could allow for instability of the hyoid. Since my left styloid is angled inward just slightly more than the right, this may be the reason the left side of my hyoid is pressing into my throat. It’s never the right side. Hang in there…waiting is difficult but 3 weeks will pass. Are you on the waiting list for cancellations? Best of luck to you.
Thanks @redbird773 - sorry I got the wrong end of the stick about ligaments. But your hypothesis makes sense. It takes up a lot of mental energy trying to work out why we have certain sensations and trying to hypothesise rational causes. I didn’t know I could go on a cancellations list - I’m UK so NHS but will look into that. Best of luck with your pre op appointment and thanks for taking the time to answer my questions.
The whole thing is a bit confusing since some people have issues where the ligaments connect to the hyoid on the opposite end from the styloid. I thought for a while that must be my problem but now I don’t think so. It does take a lot of mental energy to try to sort through things…made even more challenging when you feel so terrible. Sorry for my ignorance of the NHS. In the US you can call the doctor’s office directly and ask to be placed on his/her waiting list for cancellations. Once in a blue moon, you get lucky and get in early.
Because your styloids are poking into your throat, you most likely have some inflammation going on there that’s causing or contributing to your current symptoms. I had the breathing challenge (felt like my throat was closing when my head was in the “wrong” position). I had strange numbness & tingling in the roof of my mouth & gums at times, too, & sometimes a feeling like I’d just consumed something that scalded the inside of my mouth. All these things went away after my ES surgeries.
Even if your doctor is dismissive about your current symptoms being related to ES, you now know that there is most likely a link based on what you’ve just read in redbird’s & my replies to you.
Oh no it’s quite possibly me that’s ignorant to the cancellation appointments. I’m going to look into it tomorrow. I have the doctor’s secretary’s direct line - it’s worth checking.
Thanks @Isaiah_40_31 it’s so helpful to hear about other people’s experiences. I have the burning sensation too, I’ve gotten used to it now and although it’s painful, I’m able to put it to the back of my mind, especially since the doctor has confirmed it’s my nerves being pinched.
I also saw on another post how your scars have healed up and honestly I couldn’t see where they are. It was a bit of a shock seeing the fresh scars in another photo earlier in the post and it made me worry about surgery but your photos are really reassuring. I just want those styloids out now. Fingers crossed I have an understanding consultant.
The surgeons in the UK use a “face lift” incision from what I’ve seen so it’s more behind the ear & potentially even less visible. Good surgeons will do their very best to leave no trace of the work they’ve done. It’s a positive testimony to their skill levels & helps us feel happier about the end results as well. That said, I’d take a visible scar any day over having ES symptoms. I am indeed blessed & thankful to have healed so well.
Hi @Mafre. It sounds like your symptoms are very similar to mine. I also have anxiety which can sometimes run my life.
When the pain hits a new high note or I have another strange symptom, it ramps up the anxiety. When that happens I try to stop and talk to my pain and anxiety - acknowledge if you will, greet it, confront it. - “oh, you back again.” It helps to feel like I have control. Of course, before I knew it was ES there was not much I could do to ease the worry.
I also have a 30 min guided meditation “for relaxation and sleeping” in my itunes that can help block everything else out. I love to be active - swimming and biking but all I can do now is take long walks. Sometimes all I want to do is sit and binge watch anything, as long as I don’t have to move. Several months ago, before the symptoms got worse, I took a painting class and I found that I got so into what I was doing that it helped me to “forget,” at least briefly. Anything to get me out of my head.
With all of that said, dealing with so much - doctors, pain, insurance, work, family, scheduling, waiting, more waiting … it is sometimes hard to cope. This site is a wonderful resource for which I am eternally grateful.
I love what you said BrooklynGirl. I see my journey as “BK” and “AK”. Before knowing and after knowing. They are different. My head was in a different place before knowing what was wrong. It’s rough. After diagnosis I was like “Ok got it, what’s the next step”. Having said that I still had a hiccup after knowing (doctor refused to help me) but I’m telling you it was nothing like the darkness/uncertainty of what was wrong. I like how you acknowledge the pain with a polite greeting even though you want to tell it to go to he**.
Thanks @BrooklynGirl, I think that’s a great way to deal with it. I’ll try acknowledging it next time.
I also have quite unforgiving anxiety which can be overwhelming sometimes.
I found out I had ES relatively quickly after complaining about throat pain and then I was kind of left with it, without any further information. It’s only 2 years later that i’m starting to realise all the weird things that have been going on in my throat and have been causing me to worry could be down to these troublesome little bones. I feel like I’m still trying to get to grips with it all and new symptoms are presenting themselves all the time.
My anxiety actually became noticeable around the same time I was diagnosed with ES and I was prescribed medication. Looking back I’m wondering whether my anxiety was also caused by ES rather than a separate or parallel problem.
Doing something like painting sounds like a good idea. I love drawing and can get lost in that.
Hi Mafre & BrooklynGirl,
Here are two possible explanations for higher anxiety w/ ES:
Your vagus nerve plays a role in feeling anxiety among its many functions. If it is being irritated by your styloids or calcified ligaments, I believe (note the “I” in that statement ) that excessive anxiety w/ ES can be related to vagus nerve impingement or irritation. Another thought is, it may just go w/ our bodies’ natural fight or flight instinct. Chronic pain is threatening. As our brains try to figure out how to deal with it, cortisol levels rise which can cause the fight or flight reaction & higher anxiety levels.
Thanks for thinking of me, @SewMomma:) I am excited to get better. I’ll probably be a little bit nervous in the morning. Super early start…surgeon asked me to be there at 6:30. But, my body is still operating 2 hours ahead so it will work out great:) My mom is here and we will stay until Saturday. I also met @Isaiah_40_31 right before the pre-op appointment. Such a genuinely kind and compassionate person! Wonderful to have the opportunity to chat with an ES veteran! I feel ready now
) that excessive anxiety w/ ES can be related to vagus nerve impingement or irritation. Another thought is, it may just go w/ our bodies’ natural fight or flight instinct. Chronic pain is threatening. As our brains try to figure out how to deal with it, cortisol levels rise which can cause the fight or flight reaction & higher anxiety levels.
