Hello...new member here!

Just got diagnosed before Xmas by an ENT doc who said I was his 2nd case in 15 years. However; he is sending me to U of M where he feels I can get more experienced help.
My symptoms started with dull ear pain. Quickly it morphed to my right tonsil area. That’s where the ENT felt a bone. My teeth hurt off and on as well as my jaw…all on the right side. My CT scan shows elongation on both sides. I am curious about some strange "off balance " feeling I 've had for years. The problem is I have a mild case of Multiple Sclerosis. But I 'm very curious if this "feeling " I get may be from the ES? I started the spacey head feeling wayyyy before my MS diagnosed along with jaw pain I blamed on squinting too much. Anyway I am still waiting on my referral to U of M and it probably won’t be until March.

Oh…I should also mention I have neck stenosis from a whip lash injury when I was 6 years old

Welcome Ivy!

Alot of us have dizziness; I get dizzy, and just spacey/ lightheaded, as you do. I don't know with me if it's the ear problems I get from ES, low blood pressure, or my neck in general, as I've had it on and off for a while (I had whiplash injury 20 years ago, and had ongoing minor problems with that before the ES, plus now have a slipped disc). The physio exercises I've been given for my neck seem to be helping at the moment, so it's lessening; just very gentle stretches side to side, and tucking my chin down gently. It hurts a bit from the styloids when I do the exercises, but improves the disc problem!

Some of the others have vascular ES, where it's pushing on a blood vessel, and that can cause really bad dizziness.

There definitely seems to be a link with either tonsillectomy, or neck trauma like whiplash with ES.

Hi Ivy,

I, too, have had whiplash & a major head injury. I also have benign cysts in my thyroid (it seems a number of people w/ ES have some thyroid issue or the other). I know that doctors aren't convinced there's a link between head/neck injury & ES but it seems plausible to me that there could be a correlation. There's also a potential hereditary component for some people. There have been enough people w/ ES who still have their tonsils that the tonsillectomy theory has kind of been ruled out. I think if you stay connected to this site you will get some good answers to questions you may have regarding symptoms & surgery & post surgical recovery.

I hope the time passes quickly for you as you wait for your appointment in March.

:)

Isaiah 40:31


Jules said:

Welcome Ivy!

Alot of us have dizziness; I get dizzy, and just spacey/ lightheaded, as you do. I don't know with me if it's the ear problems I get from ES, low blood pressure, or my neck in general, as I've had it on and off for a while (I had whiplash injury 20 years ago, and had ongoing minor problems with that before the ES, plus now have a slipped disc). The physio exercises I've been given for my neck seem to be helping at the moment, so it's lessening; just very gentle stretches side to side, and tucking my chin down gently. It hurts a bit from the styloids when I do the exercises, but improves the disc problem!

Some of the others have vascular ES, where it's pushing on a blood vessel, and that can cause really bad dizziness.

There definitely seems to be a link with either tonsillectomy, or neck trauma like whiplash with ES.

I still have my tonsils...I do have thyroid disease but told no nodules. I have vitamin deficiencies and wonder if that plays a roll. I read low D and K and cal and high pth can cause this. Also read high doses of D without the right amount of cal and mag and k2 can cause this. Who knows. :/ Ive been D, mag and k deficient for years.

Interesting! I have a thyroid nodule. I also developed a ganglia on the ligaments on the palm of my right hand. I also was deficient in D3 and took the mega doses for a short time. I take 1000 iu during the winter months now. I don’t take the calcium or magnesium. I’m thinking that if ES is so rare, we may never know what causes it.

Just found this discussion.

I also have thyroid disease and ES. Both seemed to arise simultaneously about 5-6 years ago. After several years of hair loss, brain fog, very dry skin and other symptoms I was finally diagnosed with hypothyroidism (also have small benign growth on thyroid). I also had been complaining for several years to my doctor about a sore throat and something sticking in my throat. After a few trips to the ENT finally a consultant pressed the inside of my mouth beneath the jaw bone and it was painful. She suggested that it was ES.

I can't recall any early trauma however six years ago I was misdiagnosed and treated for trigeminal neuralgia. I had been to my dentist with tooth ache and after an x-ray he said there was nothing wrong with my teeth. Went to my GP and she treated me for trigeminal neuralgia which not only has an infectious cause but can also be put down to having a psychological cause. She decided to treat me for the latter and I was given heavy painkillers and tranquillisers. They never worked. After about three weeks and continuous chronic pain I decided to seek a second opinion from another dentist. He x-rayed my mouth and found a badly infected tooth and after a course of antibiotics the tooth was extracted. The pain went away. However, not long after that I began experiencing the feeling of something in my throat and soreness that radiated to my ear. About two years later I noticed my hair falling out. My GP and other doctors at the surgery refuse to believe that there is a connection with that incident and the hypothyroidism and ES.

It's frustrating- we go round and round in circles trying to find the cause...it'd be nice for a doctor to give us answers, but that doesn't seem to happen very often! Especially when there's several problems! I have very dry eyes and mouth, and I'm wondering if an autoimmune disease is the cause, but it does seem to be worse on the left side, which is the side I have the most ES pain on! Do they know what causes the ganglia thing on your tendons, Ivy? I have a couple of them too.

I get ganglion cysts in my hands periodically but they have all resolved on their own. Somehow I don't think they're related to ES but you may have a point, Jules. It could all be autoimmune related. I just never thought of connecting all these things together.

Isaiah 40:31

They don’t know the cause of ganglia, but I was concerned about developing anything weird with the drugs I take for MS. Doc didn’ think anything was related.
Now I have this ES thing! I am over fifty years old so I get a lot of "age " excuses from the docs. Menopause hit too so I feel like I 'm falling apart!

My hubby and I have a 'how old do you feel today?' competition in the mornings.....my body is always estimated to be way older than my mind, and his is too! Know what you mean about falling apart! You've got to laugh; it's better than crying!

Several people on here have suggested that the calcification of ligaments might be the body's over the top response to an injury, and maybe that all links in with an auto-immune disease!

Im going through peri menopause and yeah it does make you feel like you're falling apart. I wonder how many of us were deficient in a vitamin...for instance D. I was for years...Mag too and K. I started high doses of D in 2011 and then in 2012 I first felt this bone in my throat...DXd with ES. I researched and found that high doses of D without cal, mag and K2 can cause soft tissue calcs.