Do you know why we have this?

So, I just found out I need a 4th surgery… I actually am so beyond miserable and need to just get the surgery over with…but after doing a TON of research… I have come up with reason as to why we get this… I will let others know once I get a treatment done after surgery… If it is what i’m thinking…It really shouldn’t talk Dr.'s to be rocket scientists to help and know why this is happening…This is by far the most agonizing situation no one should ever deal with… I hope I find us a cure! cross your fingers… :wink:

A cure would be good… while docs keep insisting it’s rare then there won’t be much research done!
Needing more surgery must be so frustrating, have just had another new member posting needing surgery for re-growth- see CobyCo’s posts.

If it’s the sylohyoid ligament… I may have a good idea… have you had neck X-rays done? is it actually the styloid thats calcifying? I did see that the ligament from stylohyoid is attached to the lesser cornu of hyoid. what pain are you in?

Right now i have this awful pressure in one spot on forehead… my eyes feel like theres pressure and i cannot turn head

I am astonished how may people talk about recurrence of ES. I just didn’t think it possible before; if they chop off part of your leg, it doesn’t grow back, after all. My dad, a retired ophthalmologist (who thinks he knows all things medicine, like most docs), said, “You don’t have cancer; it isn’t growing back.”

I had these removed from the middle of mine before my recent lapse back into pain:

I wish I knew why we suffered from this, and why there isn’t a clear path out of it for good. It just seems so strange (and not particularly fun).


I wonder how many of us are taking Vitamin D3??? My research stated that’ “Vitamin D promotes calcium absorption in the gut and maintains adequate serum calcium and phosphate concentrations to enable normal mineralization of bone” I’ve been on a daily 2000 IU dose for 5 years by Dr. prescription. Wondering if it is reminaralizing [growing] my Styloid?

There have been a few discussions about this- quite a few members seem to have been taking Vit D or calcium supplements. The only research I found to possiblt support this idea was a report about chronic kidney disease (which messes with the body’s calcium balance and can lead to calcium being deposited in the body), and they found that some elderly patients had got elongated SP’s after being ill a while, so it doesn’t seem unreasonable.

I’m taking a few Biology classes right now… I honestly do not think Vitamin D has anything to do with it…unfortunately but that’s only what I think

Ok, I see my surgeon November 8th, so I will ask… But… theres a process our bones go through… called mineralization, and it’s either when bone is “growing” “repairing”

thats when cells called osteoblasts form bone… Don’t quote me on this… Just info I’m learning… But when the body is going through “TRAUMA” this is what the osteoblasts, trying to fix or protect the body… So I have a few ideas why this could be taking place… Because why is it happening in our neck not anywhere else? Well, there are “bone spurs” but this is different…

Has anyone else been told they has ligamentous laxity???

It’s crazy what our bodies go through… was that your first surgery? where did they remove those from? Styloid? Hyoid?

They were cut right from the middle of each, between the ear and the hyoid bone. My hyoid dropped somewhere down into my lower neck since it is no longer supported from above. So I still had some bone left at the styloid at the top and some at the hyoid. It was my first surgery (and I had naively hoped my last).

I agree on the vitamin D and calcium info, BTW. I don’t take either, and live in the Northwest (where we have vitamin D deficiencies typically), so it at least doesn’t seem to be the issue with me. And I haven’t had trauma and have no kidney issues, so I can’t link my growth to anything that I’ve seen in the literature. Of course, with the literature being as limited as it is, that is probably to be expected.

well, there are two things I wonder about… one being ligamentous laxity… Have you had any issues with spine or ligaments? Are you “flexible?” Ive had issues with menaces, labrum, and neck… and was told I have that… and with our necks needing to “hold” our heads… if they are lax… I think this could be part… do you get muscle spasms in neck?

I haven’t had any previous issues, really, other than bursitis from time to time (shoulders, hips and knees). Not sure if that could be in any way related. But if that is the case, shouldn’t my neck have been hurting me following removal of that support through the surgery last year?

I don’t get muscle spasms.

I am, however, an Eagle Scout, and I figure that was the real start of this for me. j/k, of course, but it is the first thing that comes to mind every time I try to come up with reasons for why this is happening to me. Is being a Seahawks fan implicated? Maybe. At least I’m not also an Eagles fan. Who among us could be?

‘Hotel California’ comes in handy if you’re seeing Dr Samji though!
We’ve had discussions before about the Vit D/ Calcium issues- there have been quite a few members taking these supplements, plus thyroid issues. I’ve not found any research other than the piece I mentioned before about calcium levels in chronic kidney disease patients who were found to have elongated SP’s as well, but metabolic disorders are mentioned as a possible cause for ES in some research papers, but with no figures/ specifics.

metabolic and endocrine could be involved because of where the bone is developing… thyroid could be due to the thyrohyoid ligament being affected because of this…

Here’s the thing, if you look up the anatomy around where we have our issue, there are so many things, muscles, ligaments, nerves, etc… But I’m going through some testing… and I believe it’s being caused by something no one would ever think… I am seeing my non force chiro today and I am going to discuss this with him… I use to think the trim spa I took caused this… then I realized, when I workout, more arms, head more… Is when this all takes place…One may think they have never had trauma… but the trauma could simply be from your body not functioning correctly as in structurally… We are all different… But I really think if i can help myself… maybe my story can help you guys… but if we get lab work… stuff comes back ok… then thyroid is off and then ok… its because of whats going on structurally in the neck… ugh it’s frustrating and it baffles me that Dr.'s aren’t researching it…

Weird you should ask that…I just read laxity in my latest MRI report. I continure having major issues with swallowing and choking on food as well as the sensation of constantly being strangled. I’ve suspected that it’s caused by the muscles in my neck that are hard as rocks. I have other issues going on in my neck and need to have another cervical fusion to basically fuse my entire neck into my thoracic spine.

Susan, YES!!! you are spot ON!!! They haven’t said I’m lax in my neck, although I am everywhere else so they are saying not to do this and do more or that. I did however, get an MRI, which only shows bulging discs… then I went to my non force chiro, that had me get specific x-rays… where my neck showed cervicle spondylosis… well look at this…

there, in this and i’ll look for the other site, this causes “whiplash” like symptoms that can be like “trauma” and cause other things to happen…

I saw a Nuero recently and after he did tests said basically I need my head glued on… and look at this

it specifically states… this affects the areas we are complaining about… the osteoblasts/osteophytes… and it can create “bone spurs” etcetc… I truly feel this is somewhat of what may be triggering everything

ok… see it states… it causes this… these Dr.'s need to listen to me!

That’s where I found the bone info