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.
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.
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.
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.
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!
Interesting tonsils facts, redbird773. Thank you for educating us!
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!
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).
WOW! So interesting! I love that you’re so resourceful in finding these extremely educational images for us. Thank you, redbird773!
We truly don’t appreciate how well we’re “put together” & how complex our bodies are until we end up w/ something like ES that forces us to begin investigation!
I think investigating just helps ease my mind about all of this. There is so much going on so I’ve got to read about things to see what the heck is happening to me. Like I’ve had this new issue for the past couple of days where I’ve had something spasming at the bottom of my neck. I thought it was a muscle spasm but now I suspect it is an artery since it is in sync with my heart beat. My palpitations have been very frequent (common for ES patients) but this is something new and different. I can see my neck spasming. Been trying to find info on this issue. Any thoughts?
My guess would’ve been a muscle spasm too, it could be a nerve being irritated?
Does it feel like a muscle twitch, redbird? Totally agree it could be nerve or vascularly related. It will probably go away on its own in a few days. I’ve had muscle twitches that have lasted a week. They don’t cause any harm but can be very annoying.
@Jules and @Isaiah_40_31 It seems like it’s either a muscle twitch over my left carotid or the artery itself. Checking my pulse in my wrist with one hand and placing the other hand over the “twitch”, it is in time with my heart beat. So that’s weird. Happens when lying down. But it’s not painful and I don’t have any neurological (stroke-like) symptoms. I think @SnappleofDiscord had something like this but hers were causing other issues so this makes me think somehow it’s not vascular… unless the other symptoms take time to develop. I’ll wait and see. The cardiologist is trying to decide if there is something else he wants to prescribe other than the beta blocker since it’s not helping the palpitations. It does even out the blood pressure and I think it is preventing the terrible headaches. Almost hate to mess with it since those two things are pretty important. Anyway, I’ll mention this to their office on Monday and see what they say. Thanks:)
Thank you Isaiah for the peace of mind. Its a roller coaster for sure.
Best.
Teresa
Brooklyn Girl:
Don’t be so sure about it NOT being tonsils because you had them out in third grade…I had mine out at age 30 and AGAIN at age 58, yes like cancer, tonsils can and in my case DO GROW BACK! (If all tissue is not removed, immune system issues may cause regrowth!)
I do have a condition hypogammaglobulinemia which caused mine to grow back so just be aware of this that it may happen and if you do open your mouth and look down your throat, you may be able to see this in progress!